Leire Solis represented IPOPI at the Eurordis (Rare Diseases Europe) Membership Meeting held in Budapest on May 19-20, 2017. Before the Membership Meeting a session dedicated to the participation of patient organisations in the European Reference Networks provided important information to participants.
The Eurordis General Assembly took place on May 19 with the election of new board members, discussion of upcoming Eurordis activities and the approval of several Resolutions. You can see the meeting agenda here.
The Membership Meeting included a series of workshops that aimed at providing participants with knowledge on different areas of work, such as ERNs, social aspects of patient organisations’ activities, empowering small patient organisations and complementary and alternative therapies. All presentations are available here.
Patient participation in the European Reference Networks (ERNs) is a key element in ensuring that these structures are patient-centered and respond to patients’ needs. Eurordis organised a meeting to empower patient representatives’ participation in such structures by exchanging best practices, ideas and projects that could be developed under the umbrella of the ERNs.