Alagille Syndrome Alliance (ALGSA)
Belgian Organization for Children and Adults with A Metabolic Disease(BOKS)
Canadian Association of Pompe (CAP)
Castleman Disease Collaborative Network (CDCN)
Congenital Hyperinsulinism International
Erdheim Chester Disease Global Alliance
Groupe d'Aide aux Enfants Tyrosinémiques du Québec (GAETQ)
Indian Organization for Rare Diseases
International Pemphigus & Pemphigoid Foundation (IPPF)
Macular Degeneration Partnership
National Ataxia Foundation (NAF)
The British Dupuytren's Society
The Children's Cardiomyopathy Foundation (CCF)
The Cluster Headache Support Group (CHSG)
The EveryLife Foundation for Rare Diseases
The Mesothelioma Cancer Alliance
The National Children's Cancer Society (NCCS)
The Network of Tyrosinemia Advocates (NOTA)
United Leukodystrophy Foundation (ULF)
United Leukodystrophy Foundation
The leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient.
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies.
For more information, visit the ULF website.
Email: bobrauner@ulf.org
Telephone: (800) 728-5483 | (815) 748-3211
Address: 224 North Second Street, Suite 2, DeKalb, IL 60115