- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
EURORDIS Membership Meeting
Each year, EURORDIS holds the General Assembly attended by close to 200 of its member organisations.
These events are excellent networking opportunities for patients to meet other patient advocates from around the world. It is also a moment to get a full view of EURORDIS' activities, to exchange with staff, ask questions, elect the EURORDIS Board of Directors (full members only) and to understand the action plan for the following year.
The General Assembly is coupled every two years with a 2 day capacity-building workshop, specifically targeted to our members: the EURORDIS Membership Meeting (EMM).
In every other year (even number years), it is held in conjunction with the European Conference on Rare Diseases and Orphan Products (ECRD), the largest multi-stakeholder conference for rare diseases in Europe.
EURORDIS members are invited to attend the EMM to learn more about recent updates in the rare disease community (find out more below). EURORDIS members benefit from one free pass for the meeting.
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative