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)
Erdheim-Chester Disease Global Alliance
Erdheim-Chester Disease is an extremely rare disorder that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells whose normal function is to fight infections. These cells, which are called histiocytes, infiltrate the loose connective tissue of the body. As a result this tissue becomes thickened, dense and fibrotic. Multiple different organs can be affected. Unless successful treatment is found, organ failure can result.
The ECD Global Alliance is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. Towards this mission the organization will work with the global community to accomplish the following:
- Raise awareness of ECD
- Provide support to those affected by the disease
- Advocate for and support research programs
- Share educational material and facilitate information sharing among interested parties regarding ECD.
For more information, visit the ECD Global Alliance website.
Email: liz.anderson@erdheim-chester.org
Address: ECD Global Alliance, P.O. Box 775, DeRidder, LA 70634 USA