European Joint Programme on Rare Diseases (EJP RD) Resources

Bringing over 130 institutions from 35 countries, the European Joint Programme on Rare Diseases (EJP RD) aims to create an effective, comprehensive, and sustainable rare diseases research ecosystem.

Key information and resources provided on the site include:

Additional information and resources by EJP RD:

• Key ethics and regulatory documents
• Generic Informed Consent Forms
  • in 20+ European languages for ERN (European Reference Networks) patient registries
• EJP RD events