Eurordis - Rare Disease Europe

About us

• About EURORDIS

• Our History

• Our Team

• Our Governance

• Our Strategy & Impact

• Our Funding

Activities

• Initiatives

• Programmes

• Projects & Partnerships

Our network

• Volunteers

• Members

• National Alliances for Rare Diseases

• Federations for Rare Diseases

Advocacy

• Rare disease policy

• Rare Cancers

• European Action Plan for Rare Diseases

• Parliamentary Advocates for Rare Diseases

Priority areas

• Diagnosis

• Research

• Holistic care

• Treatments

Cross-cutting areas

• European Reference Networks

• EURORDIS Ukraine Response

About rare diseases

• What is a rare disease?

• Information on your rare disease

• Rare diseases in the arts

• Personal stories

About treatments for rare diseases

• FAQ: rare disease treatments

• List of the marketing authorisations

• Compassionate use

• Pharmacovigilance

Find support

• Connect with a patient organisation

• Rare disease helplines

• Find a specialised Social Service

• Find medical expertise

• Find a community

With EURORDIS

• Become a member

• Join the EURORDIS Round Table of Companies

• ERTC Resources

• Support EURORDIS

• Careers

With our programmes & initiatives

• EURORDIS Open Academy

• Rare Barometer

• Rare Disease Day

• RareConnect

• EURORDIS Community Advisory Board Programme

With our events

• Black Pearl Awards

• European Conference on Rare Diseases (ECRD)

• Membership Meeting

• Rare Disease Week