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:
European Reference Networks (ERN) and European Patient Advocacy Groups (ePAGs) by ERN Groupings
Social innovation: patient experience and expectations
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)
14.00-17.30 Capacity-building workshops
18.00-19.00 Welcome reception for patient representatives
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.
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.