Organizations Addressing Rare Diseases

•  EURORDIS, International Federation for Spina Bifida and Hydrocephalus (IF-SBH/IF), and Rare Diseases International (RDI) are some major non-profit organizations, that deal with rare diseases.
• Alexion Pharmaceuticals, BioMarin Pharmaceuticals, and CSL Behring are for-profit organizations specializing in rare diseases.
• The Li Weibo Institute for Rare Disease Research at UMass Medical School, The University of Pennsylvania/Perelman School of Medicine/Orphan Disease Center, and University of Oxford/Oxford-Harrington Rare Disease Centre are academic institutions that conduct rare disease research.