Support/Advocacy Groups

Birth Defects

Spina Bifida Association of America                                             Information and support for individuals with spina bifida.

Chromosome Abnormalities

National Down Syndrome Society                                                    Education, research and advocacy for Down Syndrome

Congenital Adrenal Hyperplasia

CARESFoundation                                                                                  Congenital Adrenal Hyperplasia Research, Education, and Support Foundation

Congenital Adrenal Hyperplasia                                                       Education and Support Network with access to multiple message boards

Your Child With Congenital Adrenal Hyperplasia
Online publication by Garry Warne.  French, Vietnamese, and Chinese versions.

Cystic Fibrosis

Cystic Fibrosis                                                                                   Online picture book for children: Johnny the Rabbit Has Cystic Fibrosis

Fragile X

National Fragile X Foundation                                                          Unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X.              

General

New York Online Access to Health                                                     General Health database with topics organized by category or alphabetically.

Birth Defect Research
Resource for birth defect information, parent networking and birth defect research through the National Birth Defect Registry.

Centre for Genetics Education                                                       Dedicated to providing current and relevant genetics information to individuals and family members affected by genetic conditions.

Child Trends                                                                                         Social Science Research resource focused exclusively on children for improving their lives.

CYSHCN -Children with Special Healthcare Needs Survey              Data on the health and health-related services for children, youth and families in the United States

Family Voices                                                                                        A network of families and friends that advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs.

Genetic and Rare Diseases Information Center                          Employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.

The Genetic Alliance                                                                      Genetic disorder advocacy organization.

Genetic/Rare Conditions Support Groups and Information                    List of support groups organized by disorder.

MUMS - National Parent-to-Parent Network
Mothers United for Moral Support, Matching program for parents with children with disabilities or genetic disorders.

National Information Center for Children and Youth with Disabilities  List of resources for people with disabilities, organized by state.

Save Babies Through Screening
A nonprofit organization whose mission is to help prevent health issues detectable through newborn screening.  

Special Child 
An online publication for parents of children with special needs.

State Health Facts                                                                               Profiles on each state regarding health data

Hemoglobinopathies

SCDAA -Sickle Cell Disease Association of America 

Sickle Cell Information Center                                                        Provides sickle cell patient and professional education, news, research updates and world wide sickle cell resources.

Metabolic Disorders

ASA KIDS                                
A support group for families dealing with Argininosuccinic Aciduria.  

Fatty Oxidation Disorders Communication Network (FOD)                      A forum for the sharing of ideas and concerns for Fatty Acid Oxidation Disorders

Michigan PKU                                                                                        PKU suppport website that provides information, helpful hints, resources, etc for the Michigan PKU population.

National Urea Cycle Disorders Foundation                                             Non-profit organization dedicated to the identification, treatment, and cure of urea cycle disorders.

Organic Acidemia Association (OAA)                                                   Non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders.

Parents of Galactosemic Children                                                       Non-profit organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

PKU - Online                                                                                        PKU diet management tool for windows in English, Dutch, Italian, German

Tyrosinemia Support Group                                                             Online message board and support group. Contains information in Spanish

Musculo-Skeletal/Growth Disorders

Magic Foundation
A national non-profit organization providing support and education regarding growth disorders in children and related adult disorders.

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