- 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
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- 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 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 anja.helm@eurordis.org for more information. Please note that only representatives from full members can be candidates.
EURORDIS Membership Meeting 2019 BucharestThe next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Registration Registration for the EMM 2019 Bucharest and satellite meetings is now open. Practical information: Any questions regarding registration should be addressed to martina.bergna@eurordis.org. EURORDIS General Assembly 2019 & Board of Directors electionsThe 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. Five 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 anja.helm@eurordis.org before 30 March 2019. Satellite meetings to the EMMThe following meetings will take place 16 May, prior to the EMM: - Eastern European Patient Organisation’s Workshop - Share common best practice and challenges in RD policy. Closed meetings, on invitation only: - Council of National Alliance (CNA) For more information on the CNA meeting please contact anja.helm@eurordis.org. - ePAG (European Patient Advocacy Group) patient advocates 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. For more information on the ePAG satellite meeting please contact ines.hernando@eurordis.org. |
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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