Organizations

National Organizations

The TS Alliance was established in 1974 as the National Tuberous Sclerosis Association (NTSA), which it remained titled until 2000. Four mothers of children with TSC founded the organization to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of TSC.

The Acid Maltase Deficiency Association formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.

The Association for Glycogen Storage Disease was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, to stimulate research in the various forms of glycogen storage diseases and have the results communicated - to the parents, affected individuals and the public - as soon as possible.

The Association for Glycogen Storage Disease (UK) provides support and help for individuals and families affected by GSD. It does this by putting people in contact, providing information, issuing Newsletters and holding Conferences and Workshops.

The mission of the Child Neurology Foundation (CNF) is to advocate for children with neurologic disorders, to fund research, to promote child neurology as a career, to foster continuing education and to inform the general public as to the status and value of child neurology services. This mission is carried out thanks to the generosity of our doctors, donors and volunteers.

The Children's Gaucher Research Fund is a non-profit organization that raises funds to coordinate and support research aimed at finding a cure for Gaucher disease (Type 2 and Type 3) as well as providing support to families who have children who battle this disease. Type 2 and Type 3 Gaucher disease is a progressive debilitating genetic disease which attacks children, causing a variety of systemic and neurological medical complications.

CURE, Citizens United for Research in Epilepsy, is a volunteer-based nonprofit organization founded by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.

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. In this way they can support and encourage one another. An increased understanding of Fabry disease and emotional support may alleviate some of the burden associated with this rare disorder.

Huntington's Disease Society of a America is a National, voluntary health organization dedicated to improving the lives of people with Huntington's Disease and their families. We promote and support research and medical efforts to eradicate Huntington's Disease. We assist people and families affected by Huntington's Disease to cope with the problems presented by the disease. We educate the public and health professionals about Huntington's disease.