Find support groups for and learn more about your baby’s disorder and about additional resources available to you and your family.
Disorder Support and Advocacy Groups
ALD Connect
ALD Connect’s mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care. Learn more
American Sickle Cell Anemia Association (ASCAA)
An organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling, and supportive services to individuals and families at risk for Sickle Cell Anemia. Learn more
Biotinidase Deficiency Family Support Group
A non-profit, volunteer-run support group for those affected by biotinidase deficiency. Learn more
CAH Support Group
The CAH Support Group is run by people who, between them, have been living with CAH for over 100 years! We’ve been providing support to people living with CAH as well as raising awareness of the condition since 1991. Learn more
CARES Foundation
An organization that seeks to advance quality health care through support, advocacy, education, and research related to Congenital Adrenal Hyperplasia. Learn more
Cochrane Cystic Fibrosis & Genetic Disorders Review Group
An international network of healthcare professionals, researchers, and consumers dedicated to the betterment of treatment for Cystic Fibrosis and other genetic disorders. Learn more
Cooley’s Anemia Foundation
The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major. Learn more
Cystic Fibrosis Foundation
A non-profit foundation dedicated to finding a cure for Cystic Fibrosis and to improving the quality of life of those with the disease. Learn more
Fatty Oxidation Disorder Family Support Group
A volunteer support group that serves as a forum for the sharing of ideas related to Fatty-Acid Oxidation Disorders (FOD). Learn more
Galactosemia Foundation
A national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia. Learn more
Global Leukodystrophy Initiative
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies. Learn more
HCU Network America
The HCU Network America’s mission is to help patients with Homocystinuria (HCU) and related disorders manage their disease and to find a cure. Learn more
Immune Deficiency Foundation
Since 1980, the Immune Deficiency Foundation (IDF) has provided accurate and timely information for the nearly quarter-million Americans who have been diagnosed with a primary immunodeficiency disease. Today, thousands of individuals and families affected by primary immunodeficiency diseases depend on IDF for advocacy, education, and empowerment. Learn more
International Family Network for Nonketotic Hyperglycinemia (NKH)
A network of parents with children with Nonketotic Hyperglycinemia (NKH), a rare and still-incurable metabolic disorder. Learn more
Muscular Dystrophy Association
The Muscular Dystrophy Association (MDA) aims to transform the lives of people affected by neuromuscular disease. Learn more
MSUD Family Support Group
A non-profit organization dedicated to the families affected by MSUD. Learn more
National PKU Alliance
The National PKU Alliance offers several support options including adult peer mentoring, a pathways program for both adults and families, and a maternal PKU mentoring program. Learn more
National Urea Cycle Disorders Foundation
A non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals. Learn more
Organic Acidemia Association
A volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. Learn more
The Propionic Acidemia Foundation
The Propionic Acidemia Foundation is a non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. Learn more
Sudden Infant Death Syndrome and Other Infant Death Information Website (SIDS/IOD)
A not-for-profit, voluntary agency that provides information and support to families affected by Sudden Infant Death Syndrome (SIDS). Learn more
SCID, Angels for Life Foundation
SCID, Angels for Life Foundation is a non-profit voluntary foundation that provides information and support to families affected by Severe Combined Immune Deficiency (SCID). We are dedicated to helping implement newborn screening for SCID in all 50 states so no more babies have to die from this treatable disease. Learn more
SCID Support Groups from the Immune Deficiency Foundation
As part of its virtual support outreach effort, SCID Compass offers Virtual Caregivers Support Groups, an online peer support program for those families whose children have SCID. This free resource is for anyone personally affected by Severe Combined Immunodeficiency (SCID). Learn more
Sickle Cell Disease Association of America
The Sickle Cell Disease Association of America’s mission is to advocate 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. Learn more
Tyrosinemia Society
The Tyrosinemia Society’s mission is to educate and inspire individuals to improve health outcomes and advocate for adults and children with Tyrosinemia and related disorders. Learn more
The National MPS Society
The National MPS Society exists to cure, support and advocate for MPS and ML. Learn more
United Mitochondrial Disease Foundation
United Mitochondrial Disease Foundation’s mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families. Learn more
Other Resources
Baby’s First Test
Many parents are unaware of the conditions included in screening, or that it varies from state to state. Baby’s First Test brings together resources to help guide parents and health professionals alike. Learn more
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. Learn more
Family Voices
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children. Learn more
Infant Loss Resources
Private, not-for-profit network that connects people to programs, services and information relating to Sudden Infant Death Syndrome (SIDS) in Missouri and surrounding counties. Learn more
March of Dimes
March of Dimes is a nonprofit organization committed to ending preventable maternal health risks and death, ending preventable preterm birth and infant death and closing the health equity gap for all families. Learn more
NORD National Organization for Rare Disorders
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Learn more
STAR-G Parenal Diseases Fact Sheets
The STAR-G Project has put together fact sheets about disorders commonly screened for by newborn screening. The fact sheets were written specifically for families that have received an initial diagnosis of one of the disorders and want to know more general information. They address issues and answer questions that are of particular concern to parents. Each fact sheet was written by a genetic counselor and reviewed by metabolic and genetic specialists. Learn more
The Newborn Screening Family Education Program
The Newborn Screening Family Education Program is dedicated to developing opportunities for all families to learn about newborn screening and to creating educational and training resources that build confidence in families to become leaders in the newborn screening system. Learn more
