Europe
- European Hemophilia Consortium
- European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN)
- Immunodeficiency UK
- ITP Support Association
International
- GBS/CIDP Foundation International
- Guillain-Barré Syndrome Support Group
- HAEI - International Patient Organization for C1 Inhibitor Deficiencies
- International Patient Organization for Primary Immunodeficiencies (IPOPI)
- Jeffrey Modell Foundation (JMF)
- World Federation of Hemophilia (WFH)
North America
- Alpha-1 Canada
- Alpha-1 Foundation
- Committee of Ten Thousand
- GBS/CIDP Foundation International
- Hemophilia Federation of America (HFA)
- U.S. Hereditary Angioedema Association
- Immune Deficiency Foundation (IDF)
- Jeffrey Modell Foundation (JMF)
- National Bleeding Disorders Foundation
- Platelet Disorder Support Association (PDSA)
Resource Organizations
National Organization for Rare Disorders (NORD) is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.