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Parents & Families Caring for Your Child & Family

Caring for Your Child & Family Learning About Diagnoses & Conditions

Learning About Diagnoses & Conditions Angelman Syndrome (FAQ)Anxiety Disorders (FAQ)Arginase Deficiency (FAQ)Asthma (FAQ)Attention Deficit Hyperactivity Disorder ADHD (FAQ)Autism Spectrum Disorder (FAQ)Biotinidase Deficiency (FAQ)Celiac Disease (FAQ)Cerebral Palsy (FAQ)Charcot-Marie-Tooth Disease (CMT) (FAQ)Childhood Absence Epilepsy (FAQ)Childhood Obesity (FAQ)Constipation (FAQ)Cornelia de Lange Syndrome (FAQ)Cystic Fibrosis (FAQ)Depression (FAQ)Down Syndrome (FAQ)Duchenne Muscular Dystrophy (FAQ)Fabry Disease (FAQ)Fatty Acid Oxidation Disorders (MCADD LCHADD VLCADD) (FAQ)Fetal Alcohol Spectrum (FAQ)Foster Care (FAQ)Fragile X Syndrome (FAQ)Galactosemia (FAQ)Headache (FAQ)Hearing Loss & Deafness (FAQ)Homocystinuria (FAQ)Infantile Spasms (FAQ)Inflammatory Bowel Disease (FAQ)Intellectual Disability (FAQ)Leukodystrophies (FAQ)Maple Syrup Urine Disease (MSUD) (FAQ)Mucopolysaccharidosis Type I (MPS I) (FAQ)Myotonic Muscular Dystrophy (FAQ)Neonatal Opioid Withdrawal Syndrome (NOWS) (FAQ)Neurofibromatosis Type 1 (FAQ)Phenylketonuria PKU (FAQ)POTS (Postural-Orthostatic Tachycardia Syndrome) (FAQ)Prader-Willi Syndrome (FAQ)Premature Infant Follow-Up (FAQ)Rett Syndrome (FAQ)Seizure Disorders (FAQ)Spina Bifida (FAQ)Spinal Cord Injury (FAQ)Spinal Muscular Atrophy (FAQ)Tourette Syndrome (FAQ)Transgender & Gender-Diverse Youth (FAQ)Traumatic Brain Injury (FAQ)Tuberous Sclerosis Complex (FAQ)Turner Syndrome (FAQ)Type 1 Diabetes (FAQ)22q11.2 Deletion Syndrome (FAQ)XXY Syndrome (FAQ)

Healthcare Terms & Acronyms Finding Quality Information

Finding Quality Information Using Health-Related Social Media

Understanding Healthcare Problems

Understanding Healthcare Problems Before a Diagnosis

Before a Diagnosis Screening Tests and the Diagnostic Process When There are Concerns

After a Diagnosis or Problem is Identified

After a Diagnosis or Problem is Identified Responding to a Diagnosis Top Ten Things to Do After a Diagnosis

Family Support

Family Support A New (or Old) Diagnosis - You Are Not Alone Taking Care of Yourself & Your Family

Taking Care of Yourself & Your Family Caring for Yourself Caring for Your Marriage or Relationship Caring for Your Other Children Caring for Your Family & Friends Tips for Single Parents of Children With Special Needs Fathers of Children with Special Needs Respite Care Spiritual Needs

Funding Your Childs Special Needs

Funding Your Childs Special Needs Appealing Funding Denials Financing Your Childs Healthcare Understanding Your Health Insurance Services for the Uninsured & Under-insured Understanding the Affordable Care Act (ACA) & the Health Insurance Marketplace

Legal Issues

Legal Issues Laws to Know

Laws to Know HIPAA/FERPA

Estate Planning, Trusts, and Accounts Guardianship and Alternatives End of Life Considerations When Parents of Children with Disabilities Divorce

Support Groups Personal Stories

Personal Stories Things I Wish I'd Known Change it Anyway Thoughts From a Single Parent of a Great Kid I Can Play Advocating for My Daughter Building New Hopes & Dreams Cycling & Perseverance A Parent Perspecive on Dealing With Ignorance Welcome to Holland

Life Transitions with Your ChildMeeting Your Childs Needs

Meeting Your Childs Needs Early Childhood Services

Early Childhood Services Early Intervention Part C Program Additional Early Services

Caring for Children with Special Health Care NeedsCommon Problems

Common Problems Constipation

Emotional, Behavioral, & Mental Health

Emotional, Behavioral, & Mental Health The ABCs of Behavior Behavioral Therapies Everyday Strategies to Help Improve Wellness Apps to Help Kids and Teens with Anxiety Music Therapy Service Animals & Pet Therapy Trauma Treatment Models & Ratings

Addressing Bullying Social Issues & Opportunities Recreation Activities Education & Schools

Education & Schools Education FAQ Forms for Education School Options Special Education & Accommodations

Special Education & Accommodations Special Education Laws & Process Individualized Education Plan (IEP)504 Plan IEP & 504 - What is the Difference Medical Needs at School

Adaptive/Assistive Options

Adaptive/Assistive Options Adaptive Cycling Adaptive Driving Adaptive Play & Assistive Technology Adaptive Skiing Augmentative Communication (AAC)Hearing Aids Home Retro-fits Switches Wheelchairs & Adapted Strollers

Wish Granting Groups

Working with Providers

Working with Providers Partnering with Healthcare Providers Assistance in Choosing Providers

Assistance in Choosing Providers What Choices Does Your Insurance Offer Choosing a Primary Care Clinician Choosing a Subspecialist Choosing a Therapist Choosing a Mental Health Provider Choosing a Complementary & Alternative Medicine CAM Provider Dental Care Levels for CSHCN Trauma Treatment Models and Ratings

Working with Outside Caregivers

Physicians & Professionals Providing a Medical Home

Providing a Medical Home The Patient-Centered Medical Home Coding & Billing

Coding & Billing Coding for Developmental & Mental Health Screening Optimal Clinical Coding for CYSHCN

About Children & Youth with Special Health Care Needs CYSHCN Care Coordination

Care Coordination Questions & Answers about Care Coordination Family-Centered Care Coding & Billing for Care Coordination Working with Insurance Companies Care Coordinators as Family Advocates Resources for Care Coordinators

Common Issues for CYSHCN

Common Issues for CYSHCN Caring for Transgender & Gender-Diverse Youth Children with Short Stature Born Small for Gestational Age Contraception & Menstrual Management Developmental Coordination Disorder Drooling in Children with Special Health Care Needs Integrative Medicine for CYSHCN Mild Traumatic Brain Injury (TBI) & Post-concussive Syndrome Neonatal Opioid Withdrawal Syndrome (NOWS)Obesity in Children & Teens Oral Health Pain Management

Pain Management Acute Pain in Children & Adolescents Behavioral Management of Pain Chronic Pain in Children & Adolescents Pain in Children with Special Health Care Needs Pediatric Pain Assessment & Rating Scales

Procedural Anxiety Puberty & Pubertal Variations Seizures & Epilepsy

Seizures & Epilepsy CBD for Neurologic Conditions in Children Childhood Epilepsy with Centrotemporal Spikes (CECTS)Epilepsy Surgery Evaluation & Treatment of a First Unprovoked Seizure Febrile Seizures Juvenile Myoclonic Epilepsy (JME)Ketogenic Diet SUDEP (Sudden Death with Epilepsy)Tapering Antiepileptic Medication

Self-injurious Behavior Sensory Processing/Integration Disorder Sexuality & Children with Disabilities Skin & Wound Care for CYSHCN

Skin & Wound Care for CYSHCN Care of Surgical Wounds in Children Caring for Burn Injuries in Children Ostomy Care Treating Diaper Rash

Sleep Issues

Sleep Issues Behavioral Techniques to Improve Sleep Medical Conditions Affecting Sleep in Children Sleep Disorders & Parasomnias in Children Sleep Medications

Syncope Toe-Walking Toilet Training Children with Complex Medical Conditions Types of Hearing Loss

Education & Schools

Education & Schools Attention-Deficit/Hyperactivity Disorder (ADHD) for Educators School Accommodations: IEPs & 504s Specific Learning Disability

Feeding & Nutrition

Feeding & Nutrition Boosting Calories for Babies, Toddlers, and Older Children Calcium & Vitamin D Feeding & Swallowing Problems in Children Feeding Tubes & Gastrostomies in Children Formulas

Formulas Affording Formula Formula Ingredients and Components

Nutrition & Growth in Children with Complex Conditions Nutritional Needs of the Preterm Infant Premature Infant & Low Birthweight Premature Infant Growth Charts Thickened Liquids & Modified Foods

Guidelines & Algorithms

Guidelines & Algorithms Bilirubin Screening & Testing in Newborns Clinical Guidelines for Care of Children with Medical Complexity Critical Congenital Heart Disease (CCHD) Screening Evaluation for Suspected Ehlers-Danlos Syndrome Evaluation of Developmental Delay Management of Neonatal Hypoglycemia Newborn Differences of Sex Development (DSD) Admission Checklist Newborn Palliative Care Pathway Newborn Transition Care Guideline Newborn Transition Respiratory Scoring Tool Outpatient Urinary Tract Dilation Care Process Guideline Pediatric Type 2 Diabetes Screening & Management Care Process Model Prenatal Urinary Tract Dilation Care Process Guideline Suspected Neonatal Seizures Care Guidelines

Medical Technology

Medical Technology CPAP & Bilevel PAP for Children Home Ventilators Tracheostomy

Screening & Prevention

Screening & Prevention Autism Screening Childhood Lead Exposure Congenital Cytomegalovirus (CMV) Related Hearing Loss Dental & Oral Health Screening Developmental Screening Folic Acid Supplementation & Neural Tube Defects Hearing Screening Infant & Early Childhood Social-Emotional Screening Maternal Lead Exposure Mental Health Screening for Children & Teens Prevention of Recurrent Preterm Birth Postpartum Depression Screening Psychometric Testing Screening for Eating Disorders Screening for Sleep Problems Toxic Stress Screening

Transition Issues

Diagnoses & Conditions

Diagnoses & Conditions Acute Flaccid Myelitis (AFM)Angelman Syndrome Anxiety Disorders Anxiety Disorders & Attention Deficit Hyperactivity Disorder (ADHD)Arginase Deficiency Asthma Attention-Deficit/Hyperactivity Disorder (ADHD)Attention-Deficit/Hyperactivity Disorder (ADHD) & Disruptive Behaviors Attention-Deficit/Hyperactivity Disorder (ADHD) & Mood Disorders Autism Spectrum Disorder Biotinidase Deficiency Bronchopulmonary Dysplasia Celiac Disease Cerebral Palsy Charcot-Marie-Tooth Disease (Hereditary Motor Sensory Neuropathy)Childhood Absence Epilepsy Childhood Cancer Survivor Care Congenital Diaphragmatic Hernia (CDH)Constipation Cornelia de Lange Syndrome Cranial Deformation & Craniosynostosis Cystic Fibrosis Depression Diagnosis Prevalence List Duchenne & Becker Muscular Dystrophies Down Syndrome Fabry Disease Fetal Alcohol Spectrum Disorder Distinguished from Autism Fetal Alcohol Spectrum Disorders Foster Care Fragile X Syndrome Galactosemia Gastroesophageal Reflux Disease Headache (Migraine & Chronic)Hearing Loss & Deafness Homocystinuria (Classic)Infantile Spasms Inflammatory Bowel Disease Intellectual Disability & Global Developmental Delay LCHAD/TFP Deficiency Lennox-Gastaut Syndrome Leukodystrophies MCADD (Medium-Chain Acyl-CoA Dehydrogenase Deficiency)Maple Syrup Urine Disease (MSUD)Mucopolysaccharidosis Type I (MPS 1)Mucopolysaccharidosis Type I (MPS 1) Genetics Mucopolysaccharidosis Type I (MPS 1) Hematopoietic Stem Cell Transplantation & Enzyme Replacement Therapy Myotonic Muscular Dystrophy Type 1 Neurofibromatosis Type 1 Obsessive-Compulsive Disorder (OCD)Osteoporosis & Pathologic Fractures Other Names for Diagnoses & Conditions PKU & Pterin Defects Postural Orthostatic Tachycardia Syndrome (POTS)Prader-Willi Syndrome Prader-Willi Syndrome & Cognitive & Psychiatric Issues Prader-Willi Syndrome Genetics Prader-Willi Syndrome Nutrition & Diet Prader-Willi Syndrome and Complications from Obesity Premature Infant Follow-Up Premature Infant Follow-Up Draft Premature Infant and Retinopathy of Prematurity Rett Syndrome Seizures/Epilepsy Sickle Cell Disease Somatic Symptom Disorder & Functional Neurologic Disorders Spina Bifida Spinal Cord Injury Spinal Muscular Atrophy Substance Use Disorders Suicidality & Self-Harm Tourette Syndrome Traumatic Brain Injury Tuberous Sclerosis Complex (TSC)Turner Syndrome Type 1 Diabetes Tyrosinemia Type 1 VLCADD XXY (Klinefelter) Syndrome 22q11.2 Deletion Syndrome

Newborn Screening

Newborn Screening Adrenoleukodystrophy (ALD)Argininemia Argininosuccinic Aciduria Beta-Ketothiolase Deficiency (BKD)Biotinidase Deficiency CACT & CPT II Deficiencies Carnitine Palmitoyltransferase 1A (CPT 1) Deficiency Carnitine Uptake Defect Citrullinemia Type 1 Citrullinemia Type 2 & Citrin Deficiency Congenital Adrenal Hyperplasia (CAH)Congenital Hypothyroidism Critical Congenital Heart Disease (CCHD)Cystic Fibrosis (CF)Fabry Disease Galactosemia Glutaric Acidemia Type 1 Glutaric Acidemia Type 2 Guanidinoacetate Methyltransferase (GAMT) Deficiency Hearing Loss & Deafness HMG-CoA Lyase Deficiency Holocarboxylase/Multiple Carboxylase Deficiency Homocystinuria (Classic)Isobutyryl-CoA Dehydrogenase Deficiency Isovaleric Acidemia LCHAD & TFP Deficiency Malonic Acidemia Maple Syrup Urine Disease Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)Methylmalonic Acidemias Phenylketonuria (PKU)Pompe Disease Propionic Acidemia Pyruvate Carboxylase Deficiency Severe Combined Immunodeficiency (SCID)Short-Chain Acyl-CoA Dehydrogenase Deficiency (SCADD)Sickle Cell Anemia Spinal Muscular Atrophy (SMA)3MCC Deficiency 3-Methylglutaconic Aciduria (3-MGA)2M3HBA Deficiency Tyrosinemia Type 1 Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCADD)

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New Mexico Projects

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Rhode Island Projects

Rhode Island Projects Rhode Island Pediatric Psychiatry Resource Network (PediPRN)

Utah Projects

Utah Projects Utah Children's Care Coordination Network Transition to Adult Healthcare University of Utah Pediatric Resident Writing Elective University of Utah Writing & Career Development Group

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