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EURORDIS Membership Meeting (EMM) 2013 Dubrovnik

June 2013

The EURORDIS Membership Meeting is an annual event organised in a different European city each year. It provides an excellent opportunity for patient representatives and other rare disease stakeholders to gather, exchange ideas, share experiences and best practices, and learn from each other.

This year’s Membership Meeting was held in Dubrovnik, Croatia from 30 May-1 June. It was organised in collaboration with the Croatian Alliance for Rare Diseases and put the focus on national plans for rare diseases. The Council Recommendation of 8 June 2009 on an action in the field of rare diseases urges all EU Member State countries to develop and implement national plans for rare diseases by the end of 2013. Croatia is expected to join the EU this year as a Member State and is already working on a strategy for rare diseases.

The agenda for this year’s Membership Meeting was packed with exciting and thought-provoking sessions. The first day began with a Plenary Session on the State of the Art of the National Plans, which was chaired by John Dart. Presentations focused on the progress and approaches of plans in various countries, including Croatia, Denmark, Germany, and the UK. Other presentations explored key issues and best practices in national plans, such as funding, management, and monitoring.

The presentations and discussions at the EURORDIS Membership Meeting complemented the National Conferences that took place throughout Europe in 2013 via the second EU EUROPLAN project for rare disease national plans.

After the first morning’s Plenary Session, the following day and a half were broken out into workshops. Attendees were hard-pressed to choose from the array of interesting and important topics. The workshops covered a range of issues such as an Introduction to National Plans, Funding for National Plans, Rare Disease Patient Registries, European Reference Networks & Centres of Expertise, Specialised Social Services, European Platform for Rare Disease Registration, an open meeting of the EURORDIS Drug Information, Transparency & Access Task Force, Social & Medical Services Initiated by Patient Organisations, Improving Access to Orphan Medical Products, Medicines, Side Effects and Patient Safety, Off-label Medicine use in Rare Diseases, Newborn Screening and Genetic Testing, and Standards of Diagnosis & Care, Therapeutic Education.

The meeting had more than 200 participants from over 30 countries, including for the first time, representatives from Lebanon. The attendees discussed a wide range of issues facing the rare disease community, such as capacity building to meet the challenge of moving forward with national rare disease strategies.

Satellite meetings included a Learning from Each Other workshop on social media best practices and patients’ social forum RareConnect, which was particularly appreciated.

EURORDIS offered 42 fellowships for this year’s Membership Meeting, including 30 for patient organisation representatives from Croatia and surrounding countries. It was wonderful to see old friends and make new ones.

In summary, the 2013 EURORDIS Membership Meeting was a resounding success. It provided an excellent forum for rare disease stakeholders to learn from each other, share best practices, and discuss key issues facing the rare disease community. The high turnout and packed agenda demonstrate the complexity of issues facing the rare disease community, but also the importance of coming together to find solutions.

The EURORDIS Members adopted the Activity Report 2012, the Financial Report 2012, the Action Plan 2013, and the Budget 2013, on 31 May. The new Activity Report reveals that 2012 was once again a busy, robust year for EURORDIS in all areas. Notably, the number of EURORDIS members surpassed 500. Other achievements include continued active participation in the European Union Committee of Experts on Rare Diseases (EUCERD) initiatives, the EUROPLAN conferences for rare disease national plans, the International Rare Disease Research Consortium (IRDiRC), and the RD Connect project (for patient registries). 2012 also marked the first EURORDIS Awards recognising outstanding achievements in the rare disease community,  Rare Disease Day participation in a record number of countries, the continued growth of patients’ social forum RareConnect, another successful EURORDIS Summer School, expansion of the eNews and website into Russian, and much more.

The General Assembly also voted on four vacant positions in the Board of Directors, re-electing the Danish Haemophilia Society (Terkel Andersen, Denmark); DEBRA International (John Dart, UK); Selbsthilfe Ichthyose (Geske Wehr, Germany); and electing Alliance Maladies Rares (Christel Nourissier, France).