EURORDIS Membership Meeting (EMM) 2014 Berlin
February 2014
The 2014 EURORDIS Membership Meeting is being held in Berlin, Germany, in conjunction with the European Conference on Rare Diseases & Orphan Products (ECRD 2014 Berlin) from 8-10 May. Organised in a different European city each year, the EURORDIS Membership Meeting provides a unique occasion for EURORDIS Members to gather and exchange experiences and ideas.
The Meeting commences with the EURORDIS General Assembly – an opportunity for full members to have their say in the governance of EURORDIS and to weigh in on important topics. The General Assembly will put the spotlight on EURORDIS Volunteers this year. Volunteers are playing an increasingly active and vital role in EURORDIS and their valuable contribution merits recognition and visibility. A new EURORDIS website section highlighting our Volunteers is underway and the Charter of the EURORDIS Volunteers will be presented.
Other topics on the agenda at this year’s Membership Meeting include the popular Learning from Each Other sessions, designed to offer patient advocates the opportunity to meet, discuss and exchange best practices. Key presentations are followed by a discussion period during which all participants are encouraged to share their experiences. This year’s sessions will explore Crowdfunding, Education and employment initiatives, Surveys as advocacy tools, and Online patient forum RareConnect.
The day continues with four parallel Patient Advocate Capacity Building Workshops held in the afternoon on the topics of Best practice guidelines; Views on ethical, legal and social issues in research; Patient advocacy to improve access to Orphan Medicinal Products; and the Integration of Rare Diseases into social policies.
A social networking event is scheduled for the evening, allowing participants to further enjoy each other’s company – and continue the rich exchange of ideas and experiences.
EURORDIS Members adopted the Activity Report 2013, the Financial Report 2013, and the Work Plan for 2014, including the Action Plan 2014, and the Budget 2014, on 8 May.
The EURORDIS Activity Report 2013 presents a gamut of activities in which EURORDIS was engaged throughout 2013 and summarises EURORDIS’ strategic approach (2010-2015) and lists the organisation’s revenues and expenses, governance structure, staff appointments, members and supporters. It also contains the Workplan for 2014, including the Action Plan and Budget.
The General Assembly also voted on four vacant positions in the Board of Directors, re-electing the Greek Alliance for Rare Diseases PESPA, Greece, Dimitrios Synodinos; Rare Diseases Denmark (Sjældne Diagnoser), Denmark, Birthe Byskov Holm; the Romanian Prader Willi Association (RPWA), Romania, Dorica Dan; and the Federación Española De Enfermedades Raras, Spain, with a warm welcome to new representative Gema Chicano Saura and a hearty thank you to outgoing representative Rosa Sanchez de Vega.
The Board of Officers, elected annually by the Board of Directors following the General Assembly, was voted as follows: President: Terkel Andersen, Denmark; Vice President: Avril Daly, Ireland; General Secretary: John Dart, UK; Treasurer: Dimitrios Synodinos, Greece; and Officer: Dorica Dan, Romania.