Attend the EURORDIS Membership Meeting 2017 Budapest!

EURORDIS Membership Meeting 2016 Edinburgh

EURORDIS-Rare Diseases Europe represents over 700 member patient organisations.

Every year these members come together to network and participate in capacity-building workshops at the EURORDIS Membership Meeting (EMM).

This year, the EURORDIS Membership Meeting 2017 Budapest will take place from Friday 19 – Saturday 20 May at the Danubius Hotel Helia, Budapest.

Non-member patient organisations, researchers, healthcare professionals, academia and healthcare industry representatives are also invited to attend the EMM alongside over 200 patient advocates.

2017 marks the 20th anniversary of EURORDIS. Sessions at day one of the EMM will focus on achievements of the last two decades and on how to build on the success of 20 years of rare disease advocacy.

On day two of the EMM, attendees will participate in workshops on European Patient Advocacy Groups and European Reference Networks, alternative therapies, paramedical therapies, ”survival basics” for small patient organisations, and the topic of social revolution.

Six patient representatives will also have the opportunity to present innovative strategies, services or projects that could be useful for other patient groups in a soapbox session on the Saturday. If you are interested in participating, please email

EURORDIS thanks the AFM-Téléthon, the European Commission and more than 10 companies for their support to this event. Corporate partnerships are still available, please contact for more information.

Please note that the General Assembly on Friday morning is open to EURORDIS members only, all other participants are welcome to join the afternoon session from 14:30 on the Friday and participate in all workshops on the Saturday.

Satellite meetings

Several satellite meetings will also take place ahead of the EMM on Thursday 18 May. The Council of National Alliances will meet (CNA members only). In addition, European Patient Advocacy Group (ePAG) representatives will come together and participate in a leadership training. If you are an ePAG representative and interested in attending please email

ePAGs bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the development of the new European Reference Networks. Elected ePAG patient representatives liaise with these organisations to ensure true representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN. Is your patient organisation interested in joining an ePAG or would you like to become an ePAG representative? Read more or email

Eva Bearryman, Communications Manager, EURORDIS

Page created: 22/03/2017
Page last updated: 21/03/2017
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