Disease/Disability Information

UNM Truman Health Services' goal is to help clients live a healthy life with HIV. With medications and a healthy lifestyle, clients can reach an undetectable HIV viral load and improve their immune systems. Truman Health Services provides free testing, primary and specialty care for people with HIV, medication education and counseling, medication management, diagnostic assessments, neuropsychological assessments, counseling and psychotherapy, psychiatric consultations, substance use treatment and referral services, medical and non-medical case management, and social support services. They also offer chiropractic, acupuncture, medical massage and clinical nutrition.

AIDC is the Albuquerque Area's only IHS Urban dental clinic. AIDC treats the dental health of children, adults up to age 30, pregnant women, and adults in emergency care. The friendly and professional staff is excited to make AIDC the family's dental home. Services provided are preventive and routine dental services and exams, pregnant woman dental exams, braces (referral required), and same day emergency dental care.

The BIAC supports evidence based research and education and advises public and private entities to enhance the statewide system of comprehensive, community based resources, services and supports that maximize the personal choices and functional independence of persons with brain injuries. The BIAC also promotes prevention and increased public awareness to decrease the incidence of brain injuries. Members of the council include individuals with brain injuries, family members, healthcare professionals, and representatives from agencies that provide help for persons living with brain injuries.

Medical Home Portal is a tool and project that was implemented in 2001, and is utilized in Idaho, Montana, Nevada, Rhode Island, Utah, and in New Mexico that is a one-stop shop for children and youth with special health care requirements (CYSHCN) for Families, Medical Home Teams and Physicians, Caregivers and Other Professionals. They provide them with better knowledge of local resources for their care, practice-based case managers to link families and resources, and best practice guidelines for common chronic conditions in children.

We exist to provide support and assistance to all people with Down syndrome and their families. We do this by providing family services, community awareness, and educational programs. Our vision is for individuals with Down syndrome to be fully included as valued members of society, so they can each reach their personal dreams. The Down Syndrome Foundation of Southeastern New Mexico is committed to provide support and education to all individuals with Down syndrome and their families. We service nine counties: Chaves, Eddy, Lea, Roosevelt, De Baca, Curry, Lincoln, Otero, & Dona Ana, however we are always happy to help individuals outside of our service area. For more information, please contact us.

CMS offers medical services through multidisciplinary pediatric specialty clinics, private providers and public agencies. Diagnostic medical services, information and referral, case management and pre-school developmental evaluations are also available, regardless of income.

Service Include:

• Medical Management- may include payment for diagnostic services, hospitalizations, physician’s services, and some therapies.
• Multidisciplinary Pediatric Specialty Clinics- including asthma, cleft palate, genetic, metabolic, nephrology, neurology, and endocrinology clinics
• Care Coordination
• Transition Planning for Youth with Special Health Care needs
  Newborn Genetic Screening and Follow-up & Newborn Hearing Screening and Follow-up

The New Mexico Commission for Deaf and Hard of Hearing (NMCDHH) provides leadership, education, advocacy and programs to reduce barriers to the social, economic, educational, cultural and intellectual well-being of Deaf and Hard of Hearing New Mexicans and their families, friends and colleagues. The NMCDHH Department of Community Advocacy provides advocacy services on an individual level and a systems level for individuals who face communication barriers in employment, government, legal, and business settings. The Telecommunications Equipment Distribution Program (TEDP) lends telecommunications devices at no cost to qualifying New Mexico residents who need assistance in communicating on the phone. The NMCDHH also provides interpreter information.

New Mexico Autism Society is an affiliate of the Autism Society of America and follow their mission statement: Improving the lives of all affected by autism. They strive to create a community of acceptance, support and connection for those affected by autism in New Mexico. They do the following: meet monthly; support autism groups in NM; provide and promote autism-related educational programs and conferences for the community; advocate and educate regarding state and federal legislation to assist families and individuals with autism; plan recreational activities to promote emotional support for families; work on state and local committees with other agencies and organizations to further goals and to improve resources. They work with the Autism Programs at the Center for Development and Disability at the University of New Mexico, in addition to working with other autism providers throughout the state.

The New Mexico Brain Injury Resource Center (NMBIRC) is an individuals one-stop shop for information and referrals on a wide variety of topics related to brain injury including services, supports and education. The New Mexico Brain Injury Resource Center at ARCA is funded through the New Mexico Brain Injury Service Fund of the New Mexico Human Services Department. The managing partner of the New Mexico Brain Injury Resource Center (NMBIRC), ARCA, was incorporated in Albuquerque in 1957. This nationally recognized nonprofit provides lifelong supports for individuals with disabilities to live, work and enjoy rich recreational experiences in valued community roles.

Addresses the health, safety, and well-being of all infants, children, adolescents, and young adults. See also Prevention of Pediatric Overweight and Obesity at https://publications.aap.org/pediatrics/article-abstract/112/2/424/63348/Prevention-of-Pediatric-Overweight-and-Obesity?redirectedFrom=fulltext.

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.

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including 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.

Find a Provider: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

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.

Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Provides online support groups and parent community options across the country.

National

A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities. Provides the Drooling Impact Scale at https://www.aacpdm.org/UserFiles/file/The-Drooling-Impact-Scale.pdf.

AACPDM Medical Professional Directory offers patients and families the option to search for members by locations, specialty and/or patient type.

The website also offers continuing education for professionals and educational resources for individuals and families.

Funds research to improve treatment and find a cure for Propionic Acidemia. Offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

Works to cure cystic fibrosis and provide all people with CF the opportunity to lead long, fulfilling lives. Conducts research on cystic fibrosis.

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.

Offers online courses, resources, advocacy, and support groups for professionals, parents, and others interested in helping individuals with Sensory Processing Disorder.

Provides information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Supports research, public health education, professional health education, patient services, community services, and global organizations. National nonprofit with chapters in multiple states. 

Advocates for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Offers support to children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families.

Online Resources Include:

• A variety of clinical and patient resources
• Educational events for clinicians
• Find a Pediatric Endocrinologist: Search the Pediatric Endocrine Society membership list.
• Upcoming Camps: Directory of specialty camps for kids, including Diabetes Camps, Turner Syndrome Camps, and Transgender Youth and Teen Camps. Not run or endorsed by the Pediatric Endocrine Society.

Supports people living with epilepsy, families, friends, and caregivers. Many programs, including support groups, are available through local Epilepsy Foundations, which can be located here.  

Services Include:

• Education materials about epilepsy, types of seizures, triggers, diagnosis, treatment, etc.
• National policy and legal advocacy
• Research and funding
• Public awareness
• Training programs
• 24/7 information helpline
• Kids Crew- for kids ages 14 and under
• Summer Camps

Provides training and education on hearing, hearing loss, and hearing aids.

• Disease/Disability Information
• Health/Disability Related Support Groups

Protects America from health, safety, and security threats, both foreign and within the U.S. Conducts critical science and provides vital information that protects the nation against dangerous health threats, and responds to emergencies when they arise. Visit website for the most up to the minute information on COVID-19.COVID-19 UPDATE: The Vaccine Finder website is a free, online service where users can search for locations that offer vaccinations. The Website was developed by CDC and partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination service. There is now a texting option and Hotline number in both English and Spanish for finding a vaccine. The Hotline number is in place to ensure that people who aren't online (as well as people who don't speak English or Spanish) have access to all the information they need.

• Communicable Disease Control
• Vaccine Information

• Internet Information Resources
• Disease/Disability Information
• Specialized Information and Referral
• Medical Information Services

• Specialized Information and Referral
• Medical Care Expense Assistance

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Provides programs to improve the quality of life for all people affected by lupus through research, education, support and advocacy. The Foundation makes continuous updates to its COVID-19 vaccine and lupus FAQ and COVID-19 and lupus FAQ pages.

• Health/Disability Related Support Groups
• Disease/Disability Information
• Voluntary Health Organizations

Chapter Finder: Find support and connection in your community.

Provides information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

The American Stroke Association (https://www.stroke.org/) is a division of the American Heart Association focused on stroke prevention and treatment.

Works 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

Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

• Individual Advocacy
• Information and Referral
• Equipment Distribution Program by application

Supports people with inherited blood disorders through research, education, and advocacy. Provides chapters throughout the US.

Services Include:

• Information about bleeding disorders, blood types, and blood safety
• Online and in-person educational events and workshops
• Advocacy information
• [Camp Locator] helps families find a camp for a child with a bleeding disorder, siblings, or the family.

An advocacy, education and support organization for individuals with X and Y chromosome variations and their families. This includes those with Klinefelter syndrome (47,XXY), Trisomy X (47,XXX), 47,XYY, 48,XXYY, 48,XXXY and related genetic conditions.

Provides free online resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

• Informational Guides
• Virtual community
• Local chapters
• Fundraising and social events

National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision.

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

Services Include:

• Provides opportunities for support and personal contact for those with MSUD and their families.
• Distributes information and raising public awareness of MS
• Strengthens the liaison between families and professionals.
• Encourages newborn screening programs and research for MSUD.

Educates health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain.

Services Include:

• Educational materials about a variety of pain issues
• [https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Provides online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.

Provides resources for individuals with thinking and learning differences, including ADHD, dyslexia, and dyscalculia. Information for parents, educators, and young adults. Also offers a workplace program for individuals in the workplace.

Offerings include articles and online resources, information about how to get assistance, and an online community.

Provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Offers support groups for families, friends, clinicians, researchers and others whose lives have been touched by a Fatty Acid Oxidation disorder. Provides education, grief support, and networking forums.

Helps patients and families affected by Homocystinuria (HCU), Methylenetetra hydrofolate reductase (MTHFR) and selected cobalamin deficiencies by providing educational resources and community connections.

Provides information about PKU, research, advocacy, and resources.

Services Include:

• Find a PKU Clinic by state, zip code, or map.
• PKU Guide for New Parents
• PKU Patient Registry
• Clinical Trial Locator
• Support Programs
• Educational Videos
• Insurance Coverage 101
• School Information
• Cooking & Food

Provides guidance and information to families and others affected by urea cycle disorders. Creates a caring community, networking families together for support. Educates healthcare professionals on the identification, diagnosis and treatment of UCD.    

Provides awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

• Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
• Promoting awareness about OCD and related disorders to the OCD community and the general public.
• Increasing access to effective treatment through:
  • Educating mental health professionals about evidence-based treatments.
  • Providing a forum for professional collaboration and networking.
  • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider. See the Pediatric Developmental Screening Flowchart at https://www.cdc.gov/ncbddd/autism/documents/Screening-Chart.pdf .

Involved in the research and development of evidence-based behavioral interventions and measurement tools designed to improve care for families and children with autism spectrum disorder (ASD). Provides the RUBI Autism Network Parent Training program.

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director