EURORDIS Membership Meeting


EURORDIS Membership Meeting 2016 Edinburgh

The EURORDIS Membership Meeting (EMM) 2016 took place on 26 May 2016 at the EICC, Edinburgh, Scotland, in conjunction with the European Conference on Rare Diseases & Orphan Products.

The first part of the EMM, the EURORDIS General Assembly (GA), took place from 09:00 to 13:00. The GA was open to EURORDIS members only. This year an extraordinary General Assembly preceded the ordinary General Assembly to present and discuss an update to the EURORDIS by-laws.

Five positions to the EURORDIS Board of Directors were up for election at the GA.

The rest of the EMM was open to the public. From 14:00 - 17.30, the remainder of the EMM took place, including four capacity-building workshops designed to empower patient advocates and to encourage learning and knowledge exchange.

The workshop themes were:

  1. European Reference Networks (ERN) and European Patient Advocacy Groups (ePAGs) by ERN Groupings
  2. RareConnect
  3. Social innovation:  patient experience and expectations
  4. Good clinical practice in the context of ERNs

At a glance schedule – EURORDIS Membership Meeting, Thursday 26 May 2016

08.00-09.00     Registration open for EURORDIS General Assembly (EURORDIS members only)

09.00-10.00     EURORDIS Extraordinary General Assembly (EURORDIS members only)

10:00-13:00     EURORDIS Ordinary General Assembly (EURORDIS members only)

13.00-14.00     Lunch

14.00-17.30     Capacity-building workshops

18.00-19.00     Welcome reception for patient representatives

See the full EMM 2016 Edinburgh programme

See the presentations from the EURORDIS Membership Meeting 2016

Preparatory documents for the EURORDIS General Assembly and Extraordinary Assembly 2016




Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease.

Membership Meeting 2014

The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance policies and services for rare disease patients in their country and local communities. The EURORDIS Membership Meeting provides an opportunity for EURORDIS members to network, sharing best practices and increasing knowledge of issues integral to member organisations and the rare disease community and environment in each member’s country.



More information 

Previous Membership Meetings:


Page created: 23/07/2013
Page last updated: 01/06/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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