Rare Disease Research

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Rare Disease Research: Slides

This presentation provides insights into the academic institutions, for-profit, and non-profit organizations identified in the previous project.

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.
Sources
Sources