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).

Membership Meeting 2014

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 register for ECRD to learn more about recent updates in the rare disease community and meet patients from around the world. EURORDIS members benefit from a special registration fee to the ECRD. 

EURORDIS Board elections take place during the EURORDIS General Assembly to elect four new directors to the EURORDIS Board of Directors. If you would like to apply for a seat on the Board, please contact for more information. Please note that only representatives from full members can be candidates.

EURORDIS Membership Meeting 2019 Bucharest

The next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Details on how to register will be made available on this page shortly.

EURORDIS Membership Meeting Patient Advocate Fellowship Programme

EURORDIS is offering patient fellowships for up to 40 patient advocates to attend the EURORDIS Membership Meeting 2019 Bucharest.

These fellowships aim to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. The programme covers:

  • Registration (fee waiver)
  • Travel (return trip economy fare flight or train)
  • Accommodation

The total of the travel and hotel expenses reimbursed by EURORDIS cannot exceed 400€ per fellow.

To apply for a fellowship

Patient representatives wishing to benefit from this fellowship programme are invited to fill out and return the Patient Fellowship Programme Application Form.

Deadline: 28 February 2019

Selection of fellowship beneficiaries

Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee and notified by 15 March 2019.

The selection criteria are defined in the Patient fellowship Evaluation Scale.

For more information, please contact:

EURORDIS General Assembly 2019 & Board of Directors elections

The EURORDIS General Assembly 2019 will be held on Friday 17 of May from 09.30 to 12.30 as part of the EMM. This is a members only event.

Four positions to the EURORDIS Board of Directors will be up for election at the General Assembly. If you represent an organisation that is a full member of EURORDIS, you are eligible to apply for a seat on the Board. If interested, please email before 15 March 2019.

Satellite meetings to the EMM

Satellite meetings of Council of National Alliance (CNA) and of ePAG (European Patient Advocacy Group) patient advocates will take place prior to the EMM on 16 May.

For more information on the CNA satellite meeting please contact

For more information on the ePAG satellite meeting please contact The 2019 ePAG face-to-face meeting will explore a selection of good practices that patients will present and discuss with their peers. As such, this meeting will be an opportunity to learn from each other and build your network with patient advocates working in other European Reference Networks.


More information 


Previous Membership Meetings/ General Assemblies:




Page created: 23/07/2013
Page last updated: 16/01/2019
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases