Spina Bifida Association of America Information and support for individuals with spina bifida.
National Down Syndrome Society Education, research and advocacy for Down Syndrome
Congenital Adrenal Hyperplasia
Child With Congenital Adrenal Hyperplasia
Cystic Fibrosis Online picture book for children: Johnny the Rabbit Has Cystic Fibrosis
Cystic Fibrosis Foundation The Mission of the Cystic Fibrosis Foundation, a nonprofit donor foundation, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Cystic Fibrosis Foundation- Newborn Screening Information on positive CF Screening from the CFF
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.
AHRQ Agency for Health Care Research and Quality Healthcare 411 Using the latest podcasting technology, these weekly audio and video programs feature AHRQ’s latest research findings as news and informational stories on current health care topics.
New York Online Access to Health General Health database with topics organized by category or alphabetically.
Birth Defect Research
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 Health Portrait Family History Tool from the Surgeon General
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.
Got Transition? Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs.
March of Dimes The leading non-profit organization for pregnancy and baby health.
The National Alliance Devoted to education, research, policy analysis, and technical assistance in support of improved models of care for adolescents and the infrastructure changes needed to support them.
National Information Center for Children and Youth with Disabilities List of resources for people with disabilities, organized by state.
National PKU Alliance The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure.
Office of Rare Diseases-NIH The Undiagnosed Diseases Program pursues two goals: to provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge about rare and common diseases.
Preserving the Future of Newborn Screening Preserving the Future of Newborn Screening is a coalition of passionate parents, health care and public health professionals, corporations and other interested individuals. We hope to do our part to ensure better education about newborn screening, and about its benefits to society and the health of our children.
Save Babies Through
State Health Facts Profiles on each state regarding health data
Sickle Cell Information Center Provides sickle cell patient and professional education, news, research updates and world wide sickle cell resources.
Scooter SCOOTER (Sickle Cell Open, Online Topics and Educational Resources). This website contains free Open Education learning materials, quizzes, video and animations
Immune Deficiency Foundation The Immune Deficiency Foundation is the National Patient Organization Dedicated to Improving the Diagnosis, Treatment and Quality of Life of Persons with Primary Immunodeficiency Diseases through Advocacy, Education, and Research
Lysosomal Storage Disorders
Fabry Support and Information Group Our mission is to raise awareness of Fabry disease and its symptoms. The FSIG website provides mutual self-help by linking patients and family members/caregivers.
Bailey Baio Angel Foundation Provides support for those affected by Organic Acid Disorders and advocacy for newborn screening.
Fatty Oxidation Disorders Communication Network (FOD) A forum for the sharing of ideas and concerns for Fatty Acid Oxidation Disorders
Hunter's Hope Foundation The Foundation aims to increase public awareness of Krabbe Disease and other leukodystrophies, as well as to increase the likelihood of early detection and treatment. The Foundation’s goal is to fund research efforts to identify new treatments, therapies and a cure for Krabbe Disease.
International Organization of Glutaric Acidemia We are dedicated to promoting early detection, preventing neurological damage and rehabilitation to those affected by Glutaric Acidemia Type 1 (GA1) and other neurological and metabolic diseases.
The Lily Foundation The mission of the Lily Foundation is to raise awareness for expanded newborn screening across the United States and around the world. We perform media outreach to keep screening in the news and provide presentations to health care professionals, students, and parent groups.
Michigan PKU PKU
suppport website that provides information, helpful hints, resources,
etc for the Michigan PKU population.
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
Online message board and support group.
Online message board and support group.