Useful Links

Information and RD Resources

• Genetic and Rare Diseases Information Center (GARD)
• Orphanet

Orphan Drugs

• European Medicines Agency
• U.S. Food and Drug Administration (FDA)

Umbrella Patient groups

• APARDO (Asia Pacific)
• EURORDIS (Europe)
• GEISER (Latin America)
• NORD (US)
• Rare Disease International (Global)

RD Day

• Rare Disease Day

Research

• ERA-Net for Research Programmes on Rare Diseases (E-Rare)
• International Rare Diseases Research Consortium (IRDiRC)
• NCATS Rare Diseases Clinical Research Network (RDCRN)
• NIH/NCATS Global Rare Diseases Patient Registry Data Repository
• Ongoing clinical trials
• Rare Cancers: Pleural Mesothelioma See a new guide about Mesothelioma asbestos.com/mesothelioma/