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February 2014

An exciting agenda planned for the EURORDIS Membership Meeting 2014 in Berlin!

BerlinThe 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.

Registration is open for the ECRD and the EURORDIS Membership Meeting 2014we hope to see you there!

Louise Taylor, Communications and Development Writer, EURORDIS