New Mexico Medical Home Portal - National Support Services, Disab/Diag

22q Family Foundation

725 Clubhouse Drive
Aptos, CA 95003
Phone: 831-200-4227

Service Categories:

22qfamilyfoundation.org/

Address: 725 Clubhouse Drive
Aptos, CA 95003

Phone: 831-200-4227

Service Categories:

Email: info@22qfamilyfoundation.org

URL: https://22qfamilyfoundation.org/

Services Provided: Dedicated to raising awareness for 22q11.2 Deletion Syndrome while connecting, supporting and offering accurate information to families affected by the disorder. A locator map for family connections, support groups and clinics.

Provider Profiles: Executive Director Lindsey Garcia

Source:	Medical Home Portal
Last Updated:	8/23/2018

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Alexander Graham Bell Assoc for the Deaf & Hard of Hearing

3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220

Service Categories:

www.agbell.org/

Address: 3417 Volta Place NW
Washington, DC 20007

Phone: 202-337-5220

TDD: 202-337-5221

Service Categories:

Email: info@agbell.org

URL: https://www.agbell.org/

Eligibility: Individuals who are deaf or hard of hearing.

Services Provided: A resource center on hearing loss and spoken language approaches and related issues. Promotes opportunities and rights of individuals who are deaf or hard of hearing to learn to use, maintain, and improve all aspects of their verbal communication, including their abilities to use residual hearing and process both spoken and written language. Offers scholarship/ financial award opportunities, membership, information, and publications.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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American Foundation for Suicide Prevention

199 Water Street 11th Floor
New York, NY 10038
Phone: 212-363-3500

Service Categories:

afsp.org/

Address: 199 Water Street 11th Floor
New York, NY 10038

Phone: 212-363-3500

Toll Free Phone: 888-333-2377

Service Categories:

Email: info@afsp.org

URL: https://afsp.org/

Services Provided: AFSP raises awareness, funds scientific research and provides resources and aid to those affected by suicide. AFSP has local chapters in all 50 states with programs and events nationwide. Search for chapters on website.

Source:	MHP-Nationwide
Last Updated:	11/11/2019

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American Society for Deaf Children (ASDC)

PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992

Service Categories:

deafchildren.org/

Address: PO Box 3355
Gettysburg, PA 17325

Phone: 717-334-7992

Toll Free Phone: 800-942-2732

Service Categories:

Email: asdc@deafchildren.org

URL: https://deafchildren.org/

Services Provided: Families and professionals committed to educating, empowering, and supporting parents and families of children who are deaf or hard-of-hearing. Helps find meaningful communication options, particularly through the competent use of sign language, in their home, school, or community.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Amyotrophic Lateral Sclerosis Association (ALS Association)

1275 K Street NW Suite 250
Washington, DC 20005
Phone: 202-407-8580

Service Categories:

www.alsa.org

Address: 1275 K Street NW Suite 250
Washington, DC 20005

Phone: 202-407-8580

Toll Free Phone: 800-782-4747

Service Categories:

URL: http://www.alsa.org

Services Provided: Leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships.

Find a local chapter, Certified Treatment Centers of Excellence, or support group: [http://www.alsa.org/community/ ALS Association In Your Community]

Source:	Nationwide Suggest Providers Queue
Last Updated:	2/7/2020

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Angelman Syndrome Foundation

75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245

Service Categories:

www.angelman.org/

Address: 75 Executive Drive, Suite 327
Aurora, IL 60504

Phone: 630-978-4245

Toll Free Phone: 800-432-6435

Service Categories:

URL: https://www.angelman.org/

Services Provided: Our mission is to raise awareness and provide a resource and support for individuals and families living with Angelman Syndrome. Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. Regional representatives provide networking and referrals in your area.

Source:	Medical Home Portal
Last Updated:	8/6/2019

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Anxiety and Depression Association of America

8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
Phone: 240-485-1001

Service Categories:

adaa.org/

Address: 8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910

Phone: 240-485-1001

Service Categories:

URL: https://adaa.org/

Services Provided: ADAA is a national nonprofit organization dedicated to the prevention, treatment, and cure of anxiety, OCD, PTSD, depression, and related disorders and to improving the lives of all people who suffer from them.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Arc of the United States: for People with Intellectual and Developmental Disabilities

1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842

Service Categories:

thearc.org/

Address: 1825 K Street NW, Suite 1200
Washington, DC 20006

Phone: 301-565-3842

Toll Free Phone: 800-433-5255

Service Categories:

URL: https://thearc.org/

Eligibility: developmental disabilities

Services Provided: A national organization of and for people with developmental disabilities and their families. Website provides information about public policy; insurance products information; publications; discussion groups; employment registry; and links to local chapters and related organizations.

Source:	Medical Home Portal
Last Updated:	8/6/2019

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Association for X and Y Variations (AXYS)

PO Box 659
Paoli, PA 19301
Phone: 888-999-9428

Service Categories:

genetic.org/

Address: PO Box 659
Paoli, PA 19301

Phone: 888-999-9428

Service Categories:

Email: info@genetic.org

URL: https://genetic.org/

Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]

Source:	Nationwide Suggest Providers Queue
Last Updated:	2/7/2020

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Asthma, National Environmental Education Foundation (NEEF)

4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326

Service Categories:

www.neefusa.org/health/asthma

Organization Name: National Environmental Education Foundation (NEEF)
(Show others in Organization)

Address: 4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326

Service Categories:

URL: https://www.neefusa.org/health/asthma

Eligibility: Pediatric asthma, diabetes or obesity

Services Provided: Providing resources to healthcare providers on environmental health concerns and benefits. Asthma study,"Integrating environmental management of asthma into pediatric health care."

Source:	Medical Home Portal
Last Updated:	10/16/2018

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Attention Deficit Disorder Association

PO Box 103
Denver, PA 17517
Phone: 800-939-1019

Service Categories:

add.org/

Address: PO Box 103
Denver, PA 17517

Phone: 800-939-1019

Service Categories:

Email: info@add.org

URL: https://add.org/

Eligibility: Individuals with ADHD and their families

Services Provided: An international nonprofit organization founded to help adults with Attention Deficit/ Hyperactivity Disorder (ADHD) lead better lives. This volunteer-run organization provides information and resources exclusively for and about adult ADHD.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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Autism Speaks

1 East 33rd Street, 2nd Floor
New York, NY 10016
Phone: 888-772-9050

Service Categories:

www.autismspeaks.org/

Address: 1 East 33rd Street, 2nd Floor
New York, NY 10016

Phone: 888-772-9050

Toll Free Phone: 888-288-4762

Service Categories:

Email: familyservices@autismspeaks.org

URL: https://www.autismspeaks.org/

Eligibility: People with autism, their families and caregivers.

Services Provided: Provides the latest autism science and information; funding research into the causes, prevention, treatments and a cure for autism; awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/6/2019

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BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc.

302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092

Service Categories:

ncbegin.org/

Address: 302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605

Phone: 919-715-4092

TDD: 919-715-4092

Service Categories:

URL: https://ncbegin.org/

Eligibility: Parents of children who are deaf or hard of hearing

Services Provided: Information on communication options, placement, and educational programs for parents of children who are deaf or hard-of-hearing.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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BETTER HEARING INSTITUTE

700 Pennsylvania Ave SE Ste 2001
Washington, DC 20003
Phone: 202-975-0905

Service Categories:

www.betterhearing.org/

Address: 700 Pennsylvania Ave SE Ste 2001
Washington, DC 20003

Phone: 202-975-0905

Service Categories:

URL: http://www.betterhearing.org/

Services Provided: Operates a call center for consumers who have questions about hearing loss. Call 1-800-EARWELL.

Comprehensive Information and Referral
Disease/Disability Information
Information and Referral
Physician Referrals

Source:	University of New Mexico, Center for Development and Disability
Last Updated:	8/6/2019

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Beach Center on Disability, University of Kansas

Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600

Service Categories:

beachcenter.lsi.ku.edu/

Organization Name: University of Kansas
(Show others in Organization)

Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534

Phone: 785-864-7600

Service Categories:

URL: https://beachcenter.lsi.ku.edu/

Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.

Provider Profiles: Based at the University of Kansas.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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CDC National Prevention Information Network

3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
Phone: 800-232-4636

Service Categories:

npin.cdc.gov/

Address: 3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305

Phone: 800-232-4636

TDD: 888-232-6348

Toll Free Phone: 800-232-4636

Service Categories:

URL: https://npin.cdc.gov/

Services Provided: The CDC National Prevention Information Network (NPIN) is the U.S. reference, referral and distribution service for information on HIV/AIDS, viral hepatitis, sexually transmitted diseases (STDs) and tuberculosis (TB). NPIN produces, collects, catalogs, processes, stocks and disseminates materials and information on HIV/AIDS, viral hepatitis, STDs and TB to organizations and people working in those disease fields in international, national, state and local settings. All NPIN services are designed to facilitate sharing of information and resources on education and prevention services, published materials, research findings and trends among users.

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/12/2019

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Camp Kesem Nationwide

10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
Phone: 260-225-3736

Service Categories:

www.campkesem.org/

Address: 10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064

Phone: 260-225-3736

Service Categories:

Email: info@kesem.org

URL: https://www.campkesem.org/

Eligibility: children with parents with cancer

Services Provided: Kesem is a nationwide community, driven by passionate college student leaders, that supports children through and beyond their parent’s cancer. Offering innovative, fun-filled programs that foster a lasting community, we aim to ensure that every child impacted by a parent’s cancer is never alone.

Provider Profiles: Camp locator on website

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Cancer Care

275 Seventh Avenue
New York, NY 10001
Phone: 800-813-4673

Service Categories:

www.cancercare.org/

Address: 275 Seventh Avenue
New York, NY 10001

Phone: 800-813-4673

Toll Free Phone: 800-813-4673

Service Categories:

URL: https://www.cancercare.org/

Eligibility: Cancer patients, survivors and caregivers. Liimited grants for certain expenses related to cancer treatment.

Services Provided: Provides online, telephone and in-person counseling, support groups, educational workshops, publications, financial and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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CdLS Foundation, Cornelia de Lange Syndrome Foundation

30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357

Service Categories:

www.cdlsusa.org/additional-family-resources/

Organization Name: Cornelia de Lange Syndrome Foundation
(Show others in Organization)

Address: 30 Tower Lane
Avon, CT 06001

Phone: 860-753-2357

Toll Free Phone: 800-223-8355

Service Categories:

URL: https://www.cdlsusa.org/additional-family-resources/

Services Provided: A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.

Provider Profiles: M - F 8:30 - 5 ET

Source:	MHP-Nationwide
Last Updated:	11/27/2019

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Center for Parent Information and Resources

35 Halsey Street 4th Floor
Newark, NJ 07102

Service Categories:

www.parentcenterhub.org/

Address: 35 Halsey Street 4th Floor
Newark, NJ 07102

Service Categories:

Email: jwilson@spannj.org

URL: https://www.parentcenterhub.org/

Eligibility: Those who serve families of children with disabilities.

Services Provided: Serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Child Neurology Foundation

201 Chicago Avenue, Unit 200
Minneapolis, MN 55415

Service Categories:

www.childneurologyfoundation.org/

Address: 201 Chicago Avenue, Unit 200
Minneapolis, MN 55415

Service Categories:

URL: https://www.childneurologyfoundation.org/

Eligibility: For patients or caregivers, advocacy groups, health care providers, and supporters.

Services Provided: CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars

Provider Profiles: National, web-based locator for services

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Children's Craniofacial Association

13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099

Service Categories:

www.ccakids.org/

Address: 13140 Coit Road, Suite 517
Dallas, TX 75240

Phone: 214-570-9099

Toll Free Phone: 800-535-3646

Service Categories:

Email: areeves@ccakids.com

URL: https://www.ccakids.org/

Eligibility: People with facial differences and their families

Services Provided: Children's Craniofacial Association is a national nonprofit organization, dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. Annual Family Retreat & Educational Symposium is held each June to provide an opportunity to interact with others who have endured similar experiences.

Provider Profiles: Annual Family Retreat & Educational Symposium June 28 - July 1, 2018, Little America Hotel, Salt Lake City. Registration $75 - $100 per family. Scholarships available.

Source:	MHP-Nationwide
Last Updated:	11/19/2019

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Children's Tumor Foundation

120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633

Service Categories:

www.ctf.org/

Address: 120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633

Toll Free Phone: 800-323-7938

Service Categories:

Email: info@ctf.org

URL: https://www.ctf.org/

Services Provided: Ending neurofibromatosis through research. Patient Engagement program, meaning the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community. A NF Clinic Network by state.

Provider Profiles: NF Camp is the annual summer camp of the Children's Tumor Foundation, dedicated to teens and young adults living with neurofibromatosis (NF). For over 20 years we have hosted this week-long experience for teens and young adults ages 12 to 25. NF Camp takes place on the third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah. Application on CTF website.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Clubhouse International

747 Third Avenue, 2nd floor
New York, NY 10017
Phone: 212-582-0343

Service Categories:

clubhouse-intl.org/

Address: 747 Third Avenue, 2nd floor
New York, NY 10017

Phone: 212-582-0343

Service Categories:

Email: info@clubhouse-intl.org

URL: https://clubhouse-intl.org/

Services Provided: A Clubhouse is a community of people with mental illness who are working together toward a common goal, to get their lives back. Clubhouse International helps open new Clubhouses, accredits Clubhouses, trains and mentors new and mature Clubhouses, educates the public, advocates for government funding, and conducts research.

Source:	MHP-Nationwide
Last Updated:	7/17/2019

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Crohn's & Colitis Foundation

733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423

Service Categories:

www.crohnscolitisfoundation.org/

Address: 733 Third Ave Ste 510
New York, NY 10017

Phone: 800-932-2423

Service Categories:

Email: info@ccfa.org

URL: https://www.crohnscolitisfoundation.org/

Eligibility: Crohn's and Colitis patients, their families and medical professionals.

Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/7/2020

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Cure SMA

925 Busse Road
Elk Grove Village, IL 60007
Phone: 800-886-1762

Service Categories:

www.curesma.org/

Address: 925 Busse Road
Elk Grove Village, IL 60007

Phone: 800-886-1762

Toll Free Phone: 800-886-1762

Service Categories:

Email: info@curesma.org

URL: https://www.curesma.org/

Eligibility: Individuals with spinal muscular atrophy (SMA)

Services Provided: Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs. An equipment pool loans medical equipment free of charge. Annual conference.

Web-based location finder for support in your area.

Source:	MHP-Nationwide
Last Updated:	9/25/2019

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CureDuchenne

1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552

Service Categories:

www.cureduchenne.org/

Address: 1400 Quail Street, Suite 110
Newport Beach, CA 92660

Phone: 949-872-2552

Service Categories:

Email: info@cureduchenne.org

URL: https://www.cureduchenne.org/

Services Provided: Serving Duchenne patients through free education for parents, siblings, caregivers and healthcare professionals who manage care for those with Duchenne. A web locator for therapy services.

Source:	Medical Home Portal
Last Updated:	8/16/2018

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Cystic Fibrosis Foundation

4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422

Service Categories:

www.cff.org/

Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814

Phone: 301-951-4422

Toll Free Phone: 800-344-4823

Service Categories:

URL: https://www.cff.org/

Services Provided: The mission of the Cystic Fibrosis (CF) Foundation is to cure cystic fibrosis and provie all people with CF the opportunity to lead long, fulfilling lives.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.

Source:	MHP-Nationwide
Last Updated:	2/7/2020

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Depression and Bipolar Support Alliance

55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632

Service Categories:

www.dbsalliance.org/

Address: 55 East Jackson Blvd., Suite 490
Chicago, IL 60604

Phone: 800-826-3632

Toll Free Phone: 800-826-3632

Service Categories:

URL: https://www.dbsalliance.org/

Eligibility: Contact for specific information.

Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.

Provider Profiles: National

Source:	MHP-Nationwide
Last Updated:	1/17/2020

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FG Syndrome Family Alliance

922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330
Phone: 617-577-9050

Service Categories:

www.facebook.com/groups/17911785825/

Address: 922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330

Phone: 617-577-9050

Service Categories:

URL: https://www.facebook.com/groups/17911785825/

Eligibility: Families with FG Syndrome

Services Provided: Facebook page to connect to other families impacted by FG Syndrome.

Source:	Medical Home Portal
Last Updated:	8/30/2018

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Fabry Community, Sanofi Genzyme

Cambridge, MA
Phone: 617-768-9000

Service Categories:

www.discoverfabry.com/resources-and-support

Organization Name: Sanofi Genzyme
(Show others in Organization)

Address: Cambridge, MA

Phone: 617-768-9000

Toll Free Phone: 800-745-4447

Service Categories:

URL: https://www.discoverfabry.com/resources-and-support

Languages Spoken: Spanish

Eligibility: For patients and healthcare professionals

Services Provided: Offering care management by the Sanofi Genzyme drug company. Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company.

Source:	MHP-Nationwide
Last Updated:	4/23/2019

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Fabry Support & Information Group (FSIG)

108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355

Service Categories:

fabry.org/

Address: 108 NE 2nd St
PO Box 510
Concordia, MO 64020

Phone: 660-463-1355

Toll Free Phone: 866-303-2279

Service Categories:

Email: info@fabry.org

URL: https://fabry.org/

Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Source:	MHP-Nationwide
Last Updated:	1/31/2020

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Family Voices

PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774

Service Categories:

familyvoices.org/

Address: PO Box 37188
Albuquerque, NM 87176

Phone: 505-872-4774

Toll Free Phone: 888-835-5669

Service Categories:

URL: https://familyvoices.org/

Services Provided: Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.

Provider Profiles: Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Federation of Families for Children's Mental Health

9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901

Service Categories:

www.ffcmh.org/

Address: 9605 Medical Center Dr Suite 280
Rockville, MD 20850

Phone: 240-403-1901

Service Categories:

URL: https://www.ffcmh.org/

Services Provided: We are a national family-run organization dedicated exclusively to helping children with mental health needs and their families achieve a better quality of life. Provide leadership to develop and sustain a nationwide network of family-run organizations. Focus the passion and cultural diversity of our membership to be a potent force for changing how systems respond to children with mental health needs and their families. Help policy-makers, agencies, and providers become more effective in delivering services and supports that foster healthy emotional development for all children.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Find a Therapist, Psychology Today.com

Service Categories:

www.psychologytoday.com/us/therapists

Organization Name: Psychology Today.com
(Show others in Organization)

Address:

Service Categories:

URL: https://www.psychologytoday.com/us/therapists

Services Provided: National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.

Provider Profiles: Internet information resource, services locator

Source:	Medical Home Portal
Last Updated:	8/8/2018

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Five P Minus Society, 5p- (five p minus) Society

6229 Eckleson Street
Lakewood, CA 90713
Phone: 888-970-0777

Service Categories:

fivepminus.org/

Organization Name: 5p- (five p minus) Society
(Show others in Organization)

Address: 6229 Eckleson Street
Lakewood, CA 90713

Phone: 888-970-0777

Toll Free Phone: 888-970-0777

Service Categories:

URL: https://fivepminus.org/

Eligibility: Parents and health care providers of children with Cri Du Chat syndrome.

Services Provided: Provides information, communication, and support groups to families having a child with 5P- Syndrome and to spread awareness and education to the families and their service providers. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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GBS/CIDP Foundation International

Wynnewood, PA 19096
Phone: 610-667-0131

Service Categories:

www.gbs-cidp.org/

Address: Wynnewood, PA 19096

Phone: 610-667-0131

Toll Free Phone: 866-224-3301

Service Categories:

URL: https://www.gbs-cidp.org/

Services Provided: Information about Guillain-Barre Syndrome an inflammatory disorder in which your body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Co-Parenting Workshops
Family Support Centers/Outreach
Parent Support Groups
Peer Counseling

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/12/2019

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GLMA Provider Directory, GLMA Health Professionals Advancing LGBTQ Equality

1133 19th Street, NW Suite 302
Washington, DC 20036
Phone: 202-600-8037

Service Categories:

www.glma.org/index.cfm?fuseaction=Page.viewPage&pageId=939&grandparentID=534&parentID=938&nodeID=1

Organization Name: GLMA Health Professionals Advancing LGBTQ Equality
(Show others in Organization)

Address: 1133 19th Street, NW Suite 302
Washington, DC 20036

Phone: 202-600-8037

Service Categories:

Email: info@glma.org

URL: http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageId=939&grandparentID=534&parentID=938&nodeID=1

Services Provided: Are you lesbian, gay, bisexual, transgender or queer and looking for a healthcare professional you can trust?

GLMA’s online Provider Directory can help. Search for primary care providers, specialists, therapists, dentists and other health professionals in your area.

The service is free and you do not need to register.

Source:	MHP-Nationwide
Last Updated:	5/9/2019

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Genetic Alliance

4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557

Service Categories:

www.geneticalliance.org/

Address: 4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008

Phone: 202-966-5557

Service Categories:

URL: http://www.geneticalliance.org/

Services Provided: A partnership of self-help groups and professionals, Genetic Alliance has developed a series of programs designed to increase the visibility of genetics and advocacy, establish strong networks and advance important campaigns, including community-based family history. Current programs include: Advocacy ATLAS, Community Centered Family Health History, Consumer Focused Newborn Screening, and Access to Credible Genetics Resources Network

Source:	Medical Home Portal
Last Updated:	12/18/2017

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Genetic and Rare Diseases Information Center (GARD), NIH National Center for Advancing Translational Sciences

PO Box 8126
Gaithersburg, MD 20898-8126
Phone: 888-205-2311

Service Categories:

rarediseases.info.nih.gov/

Organization Name: NIH National Center for Advancing Translational Sciences
(Show others in Organization)

Address: PO Box 8126
Gaithersburg, MD 20898-8126

Phone: 888-205-2311

Toll Free Phone: 888-205-2311

Service Categories:

URL: https://rarediseases.info.nih.gov/

Languages Spoken: Spanish

Services Provided: GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic disease. In addition to website-based information you may contact a GARD Information Specialist. Also, GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often ask us.

Provider Profiles: GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).

Source:	Nationwide Suggest Providers Queue
Last Updated:	9/12/2019

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GiGi's Playhouse National, Down Syndrome Achievement Centers

2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147

Service Categories:

gigisplayhouse.org/

Organization Name: Down Syndrome Achievement Centers
(Show others in Organization)

Address: 2350 West Higgins Road
Hoffman Estates, IL 60169

Phone: 847-885-6147

Service Categories:

Email: info@gigisplayhouse.org

URL: https://gigisplayhouse.org/

Eligibility: Individuals with Down syndrome, their families and the community

Services Provided: Through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community, we offer free therapeutic and educational programming to individuals with Down syndrome and their families. At GiGi’s Playhouse families are never alone. From a prenatal diagnosis to career skills, we make a lifetime commitment to remain by their side. Families are empowered with all the tools their child needs to succeed!

Provider Profiles: Over 30 locations across the United States and Mexico and 200 inquiries to start new locations all over the world.

Source:	MHP-Nationwide
Last Updated:	9/25/2019

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Glut1 Deficiency Foundation

PO Box 737
Owingsville, KY

Service Categories:

www.g1dfoundation.org/

Address: PO Box 737
Owingsville, KY

Service Categories:

Email: info@g1dfoundation.org

URL: https://www.g1dfoundation.org/

Services Provided: A nonprofit family organization with a mission of: increased awareness, improved education, advocacy for patients and families, support and funding for research
Website resources and support

Source:	Medical Home Portal
Last Updated:	8/21/2018

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Help Me Grow National Center

Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106
Phone: 860-837-6232

Service Categories:

helpmegrownational.org/

Address: Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106

Phone: 860-837-6232

Service Categories:

URL: https://helpmegrownational.org/

Services Provided: The Help Me Grow National Center serves as a national resource to support the implementation of Help Me Grow systems throughout the country. The Center provides technical support to states and communities to operationalize efforts to plan, build, and enhance a comprehensive and integrated State Help Me Grow system, ensuring the development of robust, effective early childhood systems that promote the healthy development of every child

Provider Profiles: Help Me Grow National Center is a program of Connecticut Children's Office for Community Child Health

Source:	Medical Home Portal
Last Updated:	10/23/2018

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Hydrocephalus Association

4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811

Service Categories:

www.hydroassoc.org/

Address: 4340 East West Highway, Suite 905
Bethesda, MD 20814

Phone: 301-202-3811

TDD: 888-598-3789

Service Categories:

URL: https://www.hydroassoc.org/

Services Provided: Education, research, support and advocacy for hydrocephalus.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Immune Deficiency Foundation

110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433

Service Categories:

www.primaryimmune.org/

Address: 110 West Road Ste 300
Towson, MD 21204

Phone: 800-296-4433

Service Categories:

Email: frontdesk@primaryimmune.org

URL: https://www.primaryimmune.org/

Eligibility: Individuals with primary immunodeficiency diseases and their families

Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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International Dyslexia Association

40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232

Service Categories:

dyslexiaida.org/

Address: 40 York Road, 4th Floor
Baltimore, MD 21204

Phone: 410-296-0232

Service Categories:

Email: info@interdys.org

URL: https://dyslexiaida.org/

Services Provided: Information handbook, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.

Source:	Medical Home Portal
Last Updated:	7/23/2019

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International Foundation for Research and Education on Depression (iFred), National Foundation for Depressive Illness, Inc. (NFDI)

PO Box 17598
Baltimore, MD 21297-1598
Phone: 800-239-1265

Service Categories:

www.depression.org

Organization Name: National Foundation for Depressive Illness, Inc. (NFDI)
(Show others in Organization)

Address: PO Box 17598
Baltimore, MD 21297-1598

Phone: 800-239-1265

Service Categories:

Email: info@ifred.org

URL: http://www.depression.org

Services Provided: The International Foundation for Research and Education on Depression (iFred) is a 501(c)3 organization dedicated to researching causes of depression, to supporting those dealing with depression, and to combating the stigma associated with depression.

Source:	Medical Home Portal
Last Updated:	8/6/2018

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Invisible Disabilities Association

PO Box 4067
Parker, CO 80134

Service Categories:

invisibledisabilities.org/

Address: PO Box 4067
Parker, CO 80134

Service Categories:

URL: https://invisibledisabilities.org/

Eligibility: Invisible disabilities

Services Provided: The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Online support group community.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Jed Foundation (JED)

6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544

Service Categories:

www.jedfoundation.org/

Address: 6 East 39th Street, Suite 1204
New York, NY 10016

Phone: 212-647-7544

Toll Free Phone: 800-273-8255

Service Categories:

URL: https://www.jedfoundation.org/

Eligibility: young adults with suicidal thoughts

Services Provided: Suicide prevention and mental illness; equipping America’s teens and young adults with the skills and support they need to grow into healthy, thriving adults.
Help schools evaluate and strengthen their mental health, substance abuse and suicide prevention programs and systems to safeguard individual and community health.
Develop expert resources and create powerful partnerships to ensure more teens and young adults get access to the resources and support they need to navigate life’s challenges.
Educate and equip students, families and communities to know when and how to support others who are in distress or struggling with a mental health issue.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Lance Armstrong Foundation

2201 E. Sixth Street
Austin, TX 78702
Phone: 877-236-8820

Service Categories:

www.livestrong.org/

Address: 2201 E. Sixth Street
Austin, TX 78702

Phone: 877-236-8820

Service Categories:

URL: https://www.livestrong.org/

Eligibility: Cancer patients

Services Provided: Empowers the cancer community to address the unmet needs of cancer survivors. To do so, we encourage collaboration, knowledge-sharing and partnership. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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Learning Disabilities Association of America

4156 Library Road
Pittsburgh, PA 15234-1349
Phone: 412-341-1515

Service Categories:

ldaamerica.org/

Address: 4156 Library Road
Pittsburgh, PA 15234-1349

Phone: 412-341-1515

Service Categories:

Email: info@LDAAmerica.org

URL: https://ldaamerica.org/

Eligibility: People with disabilities, their parents, teachers, and other professionals

Services Provided: LDA provides support to people with learning disabilities, their parents, teachers and other professionals with cutting edge information on learning disabilities, practical solutions, and a comprehensive network of resources.

Source:	MHP-Nationwide
Last Updated:	8/8/2019

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Lighthouse Guild - Parent Support Network

250 West 64th Street
New York, NY 10023

Service Categories:

www.lighthouseguild.org/patients-families/tele-support-services/

Address: 250 West 64th Street
New York, NY 10023

Toll Free Phone: 800-562-6265

Service Categories:

URL: https://www.lighthouseguild.org/patients-families/tele-support-services/

Eligibility: For parents of children who are blind

Wheelchair Accessible: Lowered Elevator Controls

Services Provided: Along with our acclaimed national tele-support network, we offer a wealth of support services for parents to help you help your child become the best he or she can be.

Information and Referral
Library Services
Parent Support Groups

Source:	Help Me Grow Utah via United Way 2-1-1
Last Updated:	11/7/2019

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Listening and Spoken Language Knowledge Center, A.G. Bell

3714 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220

Service Categories:

www.agbell.org/Connect#financial-aid

Organization Name: A.G. Bell
(Show others in Organization)

Address: 3714 Volta Place NW
Washington, DC 20007

Phone: 202-337-5220

TDD: 202-337-5221

Service Categories:

Email: info@agbell.org

URL: https://www.agbell.org/Connect#financial-aid

Languages Spoken: Spanish

Services Provided: AAG Bell Financial Aid programs. Also information about language development, early intervention, and hearing technology to help you ensure your child has the opportunity to develop language on par with children who have no hearing loss.

Provider Profiles: A.G. Bell, Association for the Deaf and Heard of Hearing

Source:	Medical Home Portal
Last Updated:	7/26/2018

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Lupus Foundation of America

2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155

Service Categories:

www.lupus.org/about-us

Address: 2121 K Street NW, Suite 200
Washington, DC 20037

Phone: 202-349-1155

Toll Free Phone: 800-558-0121

Service Categories:

Email: info@lupus.org

URL: https://www.lupus.org/about-us

Services Provided: Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Source:	MHP-Nationwide
Last Updated:	8/6/2019

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Madison House Autism Foundation

15201 Shady Grove Road, Suite 200
Rockville, MD 20850
Phone: 204-246-7140

Service Categories:

www.madisonhouseautism.org/

Address: 15201 Shady Grove Road, Suite 200
Rockville, MD 20850

Phone: 204-246-7140

Service Categories:

URL: http://www.madisonhouseautism.org/

Eligibility: Autism

Services Provided: Programming is designed to not only create awareness of the lifespan issues facing adults, but to also help those on the spectrum make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.

Source:	Medical Home Portal
Last Updated:	8/6/2018

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Magic Foundation

6645 West North Avenue
Oak Park, IL 60302
Phone: 708-383-0808

Service Categories:

www.magicfoundation.org/Financial-Assistance/

Address: 6645 West North Avenue
Oak Park, IL 60302

Phone: 708-383-0808

Toll Free Phone: 800-362-4423

Service Categories:

URL: https://www.magicfoundation.org/Financial-Assistance/

Eligibility: Children with endocrine disorders.

Services Provided: The Magic Foundation provides information, resources, and an insurance and appeals assistance program, designed to assist members in the insurance appeals process as funding allows. Programs include: Pharmaceutical Company Patient Assistance Programs, Co-Pay Assistance Foundation, Insurance Appeals.

Provider Profiles: An organization of parents of children with endocrine disorders.

Source:	Medical Home Portal
Last Updated:	8/1/2018

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Maple Syrup Urine Disease Family Support Group

9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619

Service Categories:

www.msud-support.org/

Address: 9517 Big Bear Ave
Powell, OH 43065

Phone: 740-972-5619

Service Categories:

URL: http://www.msud-support.org/

Eligibility: Any persons with interest in MSUD

Services Provided: The MSUD Family Support Group membership includes families and professionals worldwide.

The MSUD Family Support Group is dedicated to:
• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/24/2020

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Mental Health America

500 Montgomery Street, Suite 820
Alexandria, VA 22314
Phone: 703-684-7722

Service Categories:

www.mhanational.org/programs

Address: 500 Montgomery Street, Suite 820
Alexandria, VA 22314

Phone: 703-684-7722

TDD: 800-433-5959

Toll Free Phone: 800-969-6642

Service Categories:

Email: info@mentalhealthamerica.net

URL: https://www.mhanational.org/programs

Eligibility: mental health

Services Provided: Programs include: public policy and advocacy at the federal, state, and regional levels; education and outreach with screening tools and research; and information and referral services.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Mom2Mom helpline, Rutgers' University Behavioral Health Care

New Brunswick, NJ
Phone: 877-914-6662 Crisis Line: 877-914-6662

Service Categories:

www.mom2mom.us.com/

Organization Name: Rutgers' University Behavioral Health Care
(Show others in Organization)

Address: New Brunswick, NJ

Phone: 877-914-6662

Crisis Line: 877-914-6662

Toll Free Phone: 877-914-6662

Service Categories:

URL: http://www.mom2mom.us.com/

Languages Spoken: Spanish

Eligibility: Mothers of children with special needs

Services Provided: 24/7 peer-support helpline for mothers of children with special needs. Offers peer support, clinical assessment, database of trained service providers, support groups.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Multiple Sclerosis Associations of America

375 Kings Highway North
Cherry Hill, NJ 08034

Service Categories:

mymsaa.org/

Address: 375 Kings Highway North
Cherry Hill, NJ 08034

Toll Free Phone: 800-532-7667

Service Categories:

Email: MSquestions@mymsaa.org

URL: https://mymsaa.org/

Eligibility: Individuals with MS

Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/8/2019

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Multiple Sclerosis Foundation (MSFOCUS)

6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Service Categories:

msfocus.org/

Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Toll Free Phone: 800-225-6495

Service Categories:

URL: https://msfocus.org/

Wheelchair Accessible: Ramps

Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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Muscular Dystrophy Association

222 S Riverside Plaza, Suite 1500
Chicago, IL 60606
Phone: 800-572-1717

Service Categories:

www.mda.org/

Address: 222 S Riverside Plaza, Suite 1500
Chicago, IL 60606

Phone: 800-572-1717

Service Categories:

Email: ResourceCenter@mdausa.org

URL: https://www.mda.org/

Services Provided: Support services, resources, transitional services, information resources for all aspects of living with muscular dystrophy/neuromuscular disease . A web-based locator to find local services and summer camps in many states. Located at more than 150 of the top health care institutions across the United States, [https://www.mda.org/care/mda-care-centers MDA Care Centers and Affiliates] serve as the nexus for expert clinical care and medical research.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Myasthenia Gravis Foundation of America Inc.

355 Lexington Ave 15th Floor
New York, NY 10017

Service Categories:

myasthenia.org/

Address: 355 Lexington Ave 15th Floor
New York, NY 10017

Toll Free Phone: 800-541-5454

Service Categories:

URL: https://myasthenia.org/

Eligibility: Patients, their families and caregivers, Myasthenia Gravis

Services Provided: MGFA serves through a network of chapters, support groups and programs. Each chapter shares the vision of a world without MG.

Adult Education
Co-Parenting Workshops
Individual Counseling
Information and Referral
Parent Support Groups
Peer Counseling
Support Groups
Supported Living Services for Adults with Disabilities

Source:	Nationwide Suggest Providers Queue
Last Updated:	11/19/2019

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Myotonic

1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777

Service Categories:

www.myotonic.org/

Address: 1004 A O'Reilly Avenue
San Francisco, CA 94129

Phone: 415-800-7777

Toll Free Phone: 866-968-6642

Service Categories:

Email: info@myotonic.org

URL: https://www.myotonic.org/

Services Provided: Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.

Provider Profiles: AKA Myotonic Dystrophy Foundation

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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NADD: National Association for People with Dual Diagnosis

12 Hurley Avenue
Kingston, NY 12401
Phone: 845-331-4336

Service Categories:

thenadd.org/

Address: 12 Hurley Avenue
Kingston, NY 12401

Phone: 845-331-4336

Service Categories:

Email: info@thenadd.org

URL: http://thenadd.org/

Eligibility: Co-existing intellectual/developmental disability (IDD) and mental health conditions or mental illness (MI)

Services Provided: An advocacy organization for individuals with dual diagnosis. Also offers training and support for professionals working with these individuals. Membership options for professionals, individuals, and organizations.

[https://thenadd.org/our-certificants/ List of Certificants and Accredited Organizations]

Source:	MHP-Nationwide
Last Updated:	3/6/2020

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NICHCY Resources, Center for Parent Information and Resources (CPIR)

35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102
Phone: 973-642-8100

Service Categories:

www.parentcenterhub.org/resourcelibrary/

Organization Name: Center for Parent Information and Resources (CPIR)
(Show others in Organization)

Address: 35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102

Phone: 973-642-8100

Service Categories:

Email: malizo@spanadvocacy.org

URL: https://www.parentcenterhub.org/resourcelibrary/

Eligibility: Disability-related issues for birth to 22

Services Provided: Information and referral center providing information on disabilities and disability-related issues for families, educators, and other professionals.

Provider Profiles: Internet information resources

Source:	MHP-Nationwide
Last Updated:	4/23/2019

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National Alliance on Mental Illness (NAMI)

3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
Phone: 703-524-7600

Service Categories:

www.nami.org

Address: 3803 N Fairfax Drive, Suite 100
Arlington, VA 22203

Phone: 703-524-7600

Toll Free Phone: 800-950-6264

Service Categories:

Email: info@nami.org

URL: https://www.nami.org

Eligibility: mental illness

Services Provided: NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Today, we are an association of hundreds of local affiliates, state organizations and volunteers who work in your community to raise awareness and provide support and education that was not previously available to those in need.

Provider Profiles: Learn about mental health conditions, types of treatment, types of mental health professionals, warning signs, and connecting with support and discussion groups.
M - F 10 to 6 ET

Source:	Medical Home Portal
Last Updated:	8/6/2018

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National Association of Anorexia Nervosa and Associated Disorders (ANAD)

220 North Green Street
Chicago, IL 60607
Phone: 630-557-1330

Service Categories:

anad.org/

Address: 220 North Green Street
Chicago, IL 60607

Phone: 630-557-1330

Service Categories:

Email: hello@anad.org

URL: https://anad.org/

Services Provided: Provides online research, educational forums, support groups, professional resources and current information on treatment and prevention of eating disorders. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/17/2020

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National Association of State Directors of Developmental Disabilities Services

1201 15th St. NW, Ste 350
Washington, DC 20005
Phone: 202-898-2578

Service Categories:

www.nasuad.org/initiatives/information-and-referralassistance/resources/federal-and-national-resources-and-contacts

Address: 1201 15th St. NW, Ste 350
Washington, DC 20005

Phone: 202-898-2578

Service Categories:

Email: info@nasuad.org

URL: http://www.nasuad.org/initiatives/information-and-referralassistance/resources/federal-and-national-resources-and-contacts

Services Provided: Federal and National Resources and Contacts:
Federal Aging and Disability Resources
Federal Health Resources
Federal Mental Health Resources
Federal Benefit Assistance Resources
Other Federal Resources
National Organizations

Provider Profiles: National Association of States United for Aging and Disabilities

Source:	Medical Home Portal
Last Updated:	12/18/2017

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National Center for Cultural Competence, Georgetown University Center for Child & Human Development

3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007

Service Categories:

nccc.georgetown.edu/index.php

Organization Name: Georgetown University Center for Child & Human Development
(Show others in Organization)

Address: 3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007

Service Categories:

URL: https://nccc.georgetown.edu/index.php

Eligibility: Developmental disabilities (DD)

Services Provided: The goal of the Community of Practice on Cultural and Linguistic Competence in Developmental Disabilities (CoP) is to increase the number, diversity, and capacity of formal and informal leaders to transform their state/territorial developmental disabilities (DD) systems by: (1) advancing and sustaining cultural and linguistic competence (CLC) systemically through changes in values, policy, structures, and practices; and (2) responding effectively to the growing cultural and linguistic diversity among people with DD and their families who reside in states, territories, and tribal nations.

Resources includes papers on developmental disabilities.

Provider Profiles: In April 2017, the NCCC, in collaboration with AIDD, selected the following states and jurisdiction for membership in the CoP: Arizona, California, Colorado, District of Columbia, Indiana, Michigan, New York, Utah, Vermont, Wisconsin

Source:	Medical Home Portal
Last Updated:	8/1/2018

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National Center for Learning Disabilities

32 Laight Street, Second Floor
New York, NY 10013
Phone: 212-545-7510

Service Categories:

www.ncld.org/

Address: 32 Laight Street, Second Floor
New York, NY 10013

Phone: 212-545-7510

Toll Free Phone: 888-575-7373

Service Categories:

URL: https://www.ncld.org/

Eligibility: Individuals with learning disabilities

Services Provided: Aims to ensure success for all individuals with learning disabilities in school, at work and in life. We:1) connect parents and others with resources, guidance and support so they can advocate effectively for their children; 2) deliver evidence-based tools, resources and professional development to educators to improve student outcomes, and 3) develop policies and engage advocates to strengthen educational rights and opportunities.

Information and Referral
Library Services
Special Education Assessment
Speech and Language Evaluations
System Advocacy
Scholarships for two graduating high school seniors with documented learning disabilities and/or ADHD who are pursuing post-secondary education.

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/8/2019

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National Children's Cancer Society

500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600

Service Categories:

www.thenccs.org/

Address: 500 North Broadway Ste 1850
Saint Louis, MO 63102

Phone: 314-241-1600

Toll Free Phone: 800-532-6459

Service Categories:

Email: lmillner@thenccs.org

URL: https://www.thenccs.org/

Eligibility: Parents and families of children in cancer treatment.Visit website for guidelines specific to each program.

Services Provided: The National Children's Cancer Society (NCCS) provides emotional, financial and educational support to children with cancer and their families and survivors. NCCS provides a Family Support Program, Transportation Assistance Fund and Emergency Assistance Fund to support families throughout the United States during their child's cancer treatment.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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National Down Syndrome Society

8 East 41st Street, 8th Floor
New York, NY 10017
Phone: 212-460-9330

Service Categories:

www.ndss.org/

Address: 8 East 41st Street, 8th Floor
New York, NY 10017

Phone: 212-460-9330

Toll Free Phone: 800-221-4602

Service Categories:

Email: info@ndss.org

URL: https://www.ndss.org/

Services Provided: A national advocacy and public policy center for persons with down syndrome. Nearly all of the 375 local affiliates have a parent support component. Affiliate services and programs may include: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down syndrome clinics, training for medical professionals and educators, Advocacy and Buddy Walks.

Source:	MHP-Nationwide
Last Updated:	8/6/2019

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National Fabry Disease Foundation

Randleman, NC
Phone: 800-651-9131

Service Categories:

www.fabrydisease.org

Address: Randleman, NC

Phone: 800-651-9131

Service Categories:

URL: http://www.fabrydisease.org

Services Provided: Information about Fabry disease, counseling through the Fabry Family Assistance Program, physician locator, stories, links to publications, videos, books for children, and more.

Provider Profiles: The Charles Kleinschmidt Fabry Family Weekend Camp, is an annual camp for children ages 6-16 with Fabry Disease and their immediate families. The camp is held annually in September at Victory Junction camp in Randleman, North Carolina. Campers are chosen by an application process. Camp expenses, including airfare, are paid for by NFDF sponsors.

Source:	Medical Home Portal
Last Updated:	7/30/2018

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National Family Association For Deaf / Blind

141 Middle Neck Road
Sands Point, NY 11050-1299
Phone: 800-255-0411

Service Categories:

nfadb.org/

Address: 141 Middle Neck Road
Sands Point, NY 11050-1299

Phone: 800-255-0411

Service Categories:

URL: https://nfadb.org/

Eligibility: Contact for specific information.

Services Provided: NFADB advocates for all persons who are deaf-blind of any chronological age and cognitive ability; supports national policy to benefit people who are deaf-blind; encourages the founding and strengthening of family organizations in each state which are dedicated to assisting families of persons who are deaf-blind; shares information related to deaf-blindness and provides resources and referrals; collaborates with professionals who work with persons who are deaf-blind; is actively involved in national projects for deaf-blind to ensure consumer and family representation; and assists in the development of materials and training seminars which benefit family members.

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/6/2019

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National Headache Foundation

Chicago, IL 60610-3131
Phone: 312-274-2650

Service Categories:

headaches.org/

Address: Chicago, IL 60610-3131

Phone: 312-274-2650

Service Categories:

Email: info@headaches.org

URL: https://headaches.org/

Services Provided: With the aim to cure headache, and to end its pain and suffering, the NHF has collected the most comprehensive information on headache and migraine on their website. Head Wise magazine provides in depth articles on advances in treatment and understanding of these complex diseases. NHF also funds headache research.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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National Institute of Mental Health Resource Center

6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464

Service Categories:

www.nimh.nih.gov/index.shtml

Address: 6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

Phone: 866-615-6464

TDD: 301-443-8431

Toll Free Phone: 866-615-6464

Service Categories:

Email: nimhinfo@nih.gov

URL: https://www.nimh.nih.gov/index.shtml

Languages Spoken: Spanish

Services Provided: Health information: mental health, getting help, statistics, clinical trials; outreach, research, opportunities for funding, labs at NIMH.

Source:	MHP-Nationwide
Last Updated:	1/17/2020

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National Institute on Deafness and Other Communication Disorders

31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044

Service Categories:

www.nidcd.nih.gov/

Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892

Phone: 800-241-1044

TDD: 800-241-1055

Service Categories:

URL: https://www.nidcd.nih.gov/

Eligibility: communication disorders

Services Provided: Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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National Kidney Foundation

30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010

Service Categories:

www.kidney.org/

Address: 30 East 33rd Street
New York, NY 10016

Phone: 800-622-9010

Toll Free Phone: 800-622-9010

Service Categories:

URL: https://www.kidney.org/

Services Provided: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. Information about kidney disease. A peer mentor support program. Self management app for food choices.

Source:	MHP-Nationwide
Last Updated:	8/13/2019

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National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100

Service Categories:

www.rarediseases.org/

Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810

Phone: 203-744-0100

Toll Free Phone: 800-999-6673

Service Categories:

URL: https://www.rarediseases.org/

Languages Spoken: Spanish

Eligibility: Persons with a rare disease, financial need.

Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Source:	MHP-Nationwide
Last Updated:	9/12/2019

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National Organization on Fetal Alcohol Syndrome

1200 Eton Court, NW, Third Floor
Washington, DC 20007
Phone: 202-785-4585

Service Categories:

www.nofas.org/

Address: 1200 Eton Court, NW, Third Floor
Washington, DC 20007

Phone: 202-785-4585

Toll Free Phone: 800-666-6327

Service Categories:

URL: https://www.nofas.org/

Services Provided: The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community, and committed to the prevention of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development, and to supporting individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/ developmental disabilities.

Source:	Medical Home Portal
Last Updated:	8/6/2019

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National Resource Center for Supported Decision-Making, Kansas University

KS
Phone: 202-448-1448

Service Categories:

supporteddecisionmaking.org/

Organization Name: Kansas University
(Show others in Organization)

Address: KS

Phone: 202-448-1448

Service Categories:

Email: JHJP@dcqualitytrust.org

URL: http://supporteddecisionmaking.org/

Eligibility: Persons with Developmental Disabilities and their families

Services Provided: Works to ensure that input is obtained from all relevant stakeholder groups including older adults, people with intellectual and developmental disabilities (I/DD), family members, advocates, professionals and providers.
Features a locator map to identify Developmental Disabilities statutes, presentations, and policy discussions. Resources library: Guardianship and Alternatives, Education and Transition Planning

Provider Profiles: A project of Quality Trust for Individuals with Disabilities, Burton Blatt Institute, Syracuse University, and Life Span Institute, University of Kansas (housing the Beach Center on Disability and the Kansas University Center on Developmental Disabilities)

Source:	Medical Home Portal
Last Updated:	12/19/2018

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Oley Foundation

214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478

Service Categories:

oley.org/

Address: 214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478

Toll Free Phone: 800-776-OLEY

Service Categories:

URL: https://oley.org/

Services Provided: Provides, information and support for parenteral nutrition consumers (HPN or home IV-fed patients) to improve their health and quality of life. Also offers a national list of Donated Equipment and Supplies.

Source:	Medical Home Portal
Last Updated:	8/20/2018

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PACER Center: Parents Helping Parents

8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000

Service Categories:

www.pacer.org/

Address: 8161 Normandale Blvd.
Bloomington, MN 55437

Phone: 952-838-9000

Toll Free Phone: 800-537-2237

Service Categories:

URL: https://www.pacer.org/

Services Provided: Champions for children with disabilities, Parent Advocacy Coalition for Educational Rights, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. A significant Learning Center, Resources, and specifically for Students and Young Adults.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Parent to Parent USA

PO Box 9054
Austin, TX 78766
Phone: 484-272-7368

Service Categories:

www.p2pusa.org/

Address: PO Box 9054
Austin, TX 78766

Phone: 484-272-7368

Service Categories:

Email: memberinfo@p2pusa.org

URL: https://www.p2pusa.org/

Services Provided: Emotional and informational support for families of children who have special needs, Parent to Parent-USA (P2P-USA) is a national nonprofit organization committed to assuring access and quality in Parent to Parent support across the country. This site highlights state's organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices.

Source:	MHP-Nationwide
Last Updated:	1/27/2020

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Patients Like Me.com

155 Second Street
Cambridge, MA 02141

Service Categories:

www.patientslikeme.com/

Address: 155 Second Street
Cambridge, MA 02141

Service Categories:

Email: support@patientslikeme.com

URL: https://www.patientslikeme.com/

Services Provided: Patients Like Me is a free health information sharing website for patients. Participants have the opportunity to share both personal stories and health data about their conditions; a network of 500,000 patients.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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Prader-Willi Syndrome Association (USA)

8588 Potter Park Drive, Suite 500
Sarasota, FL 34238

Service Categories:

www.pwsausa.org/

Address: 8588 Potter Park Drive, Suite 500
Sarasota, FL 34238

Toll Free Phone: 800-926-4797

Service Categories:

Email: support@pwsausa.org

URL: https://www.pwsausa.org/

Services Provided: An organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those impacted by Prader-Willi syndrome. Supports include: managing behavior, a Special Education consultant, Family Support Counselors, weight management, school issues, in-patient hospital and travel assistance programs, residential placement and legal issues.

Source:	Medical Home Portal
Last Updated:	8/30/2018

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Propionic Acidemia Foundation

1963 McCraren Rd.
Highland Park, IL 60035

Service Categories:

www.pafoundation.com/

Address: 1963 McCraren Rd.
Highland Park, IL 60035

Toll Free Phone: 877-720-2192

Service Categories:

URL: http://www.pafoundation.com/

Services Provided: Family support organization site offering information, family stories, frequently asked questions, newsletters, email discussion list, and other resources.

Source:	Medical Home Portal
Last Updated:	12/18/2017

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Rettsyndrome.org

4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388

Service Categories:

www.rettsyndrome.org/

Address: 4600 Devitt Drive
Cincinnati, OH 45246

Phone: 800-818-7388

Toll Free Phone: 800-818-7388

Service Categories:

Email: admin@rettsyndrome.org

URL: https://www.rettsyndrome.org/

Services Provided: An organization comprised of parents and friends of those diagnosed with Rett syndrome, providing the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Scleroderma Foundation

300 Rosewood Drive Suite 105
Danvers, MA 01923
Phone: 978-463-5843

Service Categories:

www.scleroderma.org/site/SPageServer/#.XheI-kdKjcs

Address: 300 Rosewood Drive Suite 105
Danvers, MA 01923

Phone: 978-463-5843

Service Categories:

URL: https://www.scleroderma.org/site/SPageServer/#.XheI-kdKjcs

Eligibility: Those affected by scleroderma and their families.

Services Provided: Raise funds and awareness for support, education and research.
Provides educational and emotional support, stimulates and support research designed to identify the cause and cure for scleroderma, and improve methods of treatment; and enhances the public's awareness of this disease.
Chapters and Support Groups may be located in Resources.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/9/2020

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Select Mutism Association

Service Categories:

www.selectivemutism.org/

Address:

Service Categories:

Email: info@selectivemutism.org

URL: https://www.selectivemutism.org/

Eligibility: A child or adolescent with an anxiety disorder of selective mutism

Services Provided: SMG, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child or adolescent with the anxiety disorder known as Selective Mutism, characterized by a child or adolescent’s inability to speak in one or more social settings.

Source:	Medical Home Portal
Last Updated:	5/23/2018

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Sensory Processing Disorder Foundation

5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182

Service Categories:

www.spdfoundation.net/

Address: 5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111

Phone: 303-794-1182

Service Categories:

URL: http://www.spdfoundation.net/

Services Provided: The SPD Foundation is the world leader in research, education, and awareness for Sensory Processing Disorder, a neurological condition, also known as sensory integration dysfunction.

Source:	Medical Home Portal
Last Updated:	12/18/2017

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Sibling Support Project

6512 23rd Ave NW, Unit 213
Seattle, WA 98117
Phone: 206-297-6368

Service Categories:

www.siblingsupport.org/

Address: 6512 23rd Ave NW, Unit 213
Seattle, WA 98117

Phone: 206-297-6368

Service Categories:

Email: donmeyer@siblingsupport.org

URL: https://www.siblingsupport.org/

Services Provided: A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

Provider Profiles: A Kindering Center program

Source:	MHP-Nationwide
Last Updated:	8/6/2019

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Specialisterne USA

100 West 10th Street, Suite 615
Wilmington, DE 19801

Service Categories:

usa.specialisterne.com/

Address: 100 West 10th Street, Suite 615
Wilmington, DE 19801

Service Categories:

Email: contact.usa@specialisterne.com

URL: http://usa.specialisterne.com/

Eligibility: autism

Services Provided: Specialisterne is a social business based on the belief that autistic people have extraordinary talents that can be utilized by employers, with the right understanding of how to accommodate and manage people with different personalities and skills, to gain a competitive advantage. Services include: business services, assessment program, pre-employment.
Specialisterne works with a number of community agencies to search, select, assess, onboard and coach autistic people in meaningful jobs.

Provider Profiles: Utah community agency: Columbus Community Center, Salt Lake City

Offices in New York, and California

Source:	Medical Home Portal
Last Updated:	12/18/2017

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Suicide Awareness Voices of Education

8120 Penn Avenue S Ste 470
Bloomington, MN 55431
Phone: 952-946-7998

Service Categories:

save.org/

Address: 8120 Penn Avenue S Ste 470
Bloomington, MN 55431

Phone: 952-946-7998

Toll Free Phone: 800-273-8255

Service Categories:

Email: dreidenberg@save.org

URL: https://save.org/

Eligibility: Anyone experiencing depression or thoughts of suicide, their families and loved ones.

Services Provided: A leading national nonprofit working to prevent suicide through public awareness, education and training, program and product development, and providing support and resources for those touched by suicide.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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SuperSibs, Alex's Lemonade Stand Foundation

111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034

Service Categories:

www.alexslemonade.org/childhood-cancer/for-families/supersibs

Organization Name: Alex's Lemonade Stand Foundation
(Show others in Organization)

Address: 111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004

Phone: 610-649-3034

Toll Free Phone: 866-333-1213

Service Categories:

Email: info@alexslemonade.org

URL: https://www.alexslemonade.org/childhood-cancer/for-families/supersibs

Eligibility: Siblings and parents of children with cancer.

Services Provided: A support organization for siblings during their family’s battle against childhood cancer, assuring they are honored, supported and recognized. Programs include: Comfort and Care Services; Sib Spot; SuperSib Ambassador Program

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/9/2020

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Tourette Association of America

42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999

Service Categories:

tourette.org/

Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820

Phone: 718-224-2999

Toll Free Phone: 888-486-8738

Service Categories:

Email: support@tourette.org

URL: https://tourette.org/

Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

[https://tourette.org/find-a-provider/ Find a Provider]: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

[https://tourette.org/about-tourette/overview/centers-of-excellence/center-excellence-locations/ Tourette Syndrome Centers of Excellence]: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

Source:	MHP-Nationwide
Last Updated:	2/4/2020

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Treat NMD Neuromuscular Network, Institute of Genetic Medicine, University of Newcastle upong Tyne

Service Categories:

treat-nmd.org/

Organization Name: Institute of Genetic Medicine, University of Newcastle upong Tyne
(Show others in Organization)

Address:

Service Categories:

Email: info@treat-nmd.org

URL: https://treat-nmd.org/

Services Provided: A global neuromuscular diseases organization bringing together leading specialists, patient groups and industry representatives to ensure preparedness for the trials and therapies of the future while promoting best practice today.

Provider Profiles: University of Newcastle upon Tyne, United Kingdom
Institute of Genetic Medicine
University of Newcastle upon Tyne
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom

T: +44 (0)191 241 8839

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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Tuberous Sclerosis Alliance

801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
Phone: 301-562-9890

Service Categories:

www.tsalliance.org/

Address: 801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487

Phone: 301-562-9890

Toll Free Phone: 800-225-6872

Service Categories:

Email: info@tsalliance.org

URL: https://www.tsalliance.org/

Services Provided: Tuberous sclerosis complex (TSC) nationwide nonprofit organization. Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources.

Source:	Medical Home Portal
Last Updated:	8/6/2019

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Turner Syndrome Foundation

P.O. Box 726
Holmdel, NJ 07733
Phone: 732-847-3385

Service Categories:

turnersyndromefoundation.org/

Address: P.O. Box 726
Holmdel, NJ 07733

Phone: 732-847-3385

Toll Free Phone: 800-594-4585

Service Categories:

Email: info@tsfusa.org

URL: https://turnersyndromefoundation.org/

Languages Spoken: Spanish

Services Provided: Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.

Provider Profiles: 9 - 5 EST

Source:	MHP-Nationwide
Last Updated:	12/11/2019

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US Autism & Asperger Association

12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532

Service Categories:

www.usautism.org/

Address: 12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532

Toll Free Phone: 888-928-8476

Service Categories:

URL: https://www.usautism.org/

Eligibility: autism

Services Provided: A nonprofit with a network of world-renowned professionals with expertise in Autism, Asperger Syndrome, and other related disorders. US Autism & Asperger Association hosts a compendious world conference in the United States each year, establishes standards for Autism and Asperger Syndrome training, and aligns with local community resources to offer support for the entire Autism and Asperger communities.

Provider Profiles: A resource-rich website.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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Undiagnosed Diseases Network, National Institutes of Health

9000 Rockville Pike
Bethesda, MD 20982

Service Categories:

commonfund.nih.gov/Diseases

Organization Name: National Institutes of Health
(Show others in Organization)

Address: 9000 Rockville Pike
Bethesda, MD 20982

Toll Free Phone: 844-746-4836

Service Categories:

Email: UDN@hms.harvard.edu

URL: https://commonfund.nih.gov/Diseases

Services Provided: The Common Fund’s Undiagnosed Diseases Network (UDN) is a research study to improve and accelerate diagnosis of rare and undiagnosed conditions. The UDN uses both basic and clinical research to improve the level of diagnosis and uncover the underlying disease mechanisms associated with these conditions; pioneering a new personalized medicine model.
Twelve clinical sites, a coordinating center, a sequencing core, a metabolomics core, two model organisms screening centers, and a central biorepository.

Source:	Medical Home Portal
Last Updated:	11/11/2019

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United Ostomy Association

2489 Rice Street, Suite 120
Roseville, MN 55113
Phone: 714-660-8624

Service Categories:

www.ostomy.org/

Address: 2489 Rice Street, Suite 120
Roseville, MN 55113

Phone: 714-660-8624

Toll Free Phone: 800-826-0826

Service Categories:

Email: susanburns@ostomy.org

URL: https://www.ostomy.org/

Services Provided: A national network for bowel and urinary diversion support groups in the United States. Its goal is to provide a nonprofit association that will serve to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers.

Peer Counseling

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/12/2019

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WPATH Provider Directory, World Professional Association for Transgender Health (WPATH)

East Dundee, IL

Service Categories:

www.wpath.org/provider/search

Organization Name: World Professional Association for Transgender Health (WPATH)
(Show others in Organization)

Address: East Dundee, IL

Service Categories:

URL: https://www.wpath.org/provider/search

Services Provided: Searchable provider directory of medical providers for transgender health.

Provider Profiles: Formerly known as the Harry Benjamin International Gender Dysphoria Association (HBIGDA)

Source:	MHP-Nationwide
Last Updated:	5/9/2019

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