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EURORDIS International Initiatives

With thanks to our 2022 donors:

Alnylam logo Amicus Therapeutics logo Boehringer Ingelheim logo Bristol Myers Squibb logo Chiesi logo
CSL Behring logo Everylife foundation for rare diseases logo JANSSEN - a J&J company logo KYOWA KIRIN logo
Novartis logo PTC Therapeutics logo Recordati Rare Diseases logo Roche logo Sanofi logo
Swedish Orphan Biovitrum logo Takeda logo Vifor Pharma Group logo

EURORDIS’ International Initiatives are an assembly of activities with an impact across rare diseases and across borders. This umbrella programme supports an ecosystem of recurring, interconnected activities, which together aim to:

  • Build the capacity and train patient advocates to act at the local, national and regional level;
  • Understand and present the needs, perspectives and experiences of patients and their families;
  • Empower patients and raise awareness through multilingual communications and the global rare disease day campaign;
  • Elevate the rare disease patient voice to strengthen international policy on rare diseases.

EURORDIS International Initiatives comprise of the Open Academy, the Rare Barometer, Rare Disease Day, Multilingual outreach, Rare Diseases International.