GRDO Chair Avril Daly elected Vice President of EURORDIS, the European organisation for rare diseases


29 May 2012 - The 2012 EURORDIS Membership Meeting, which took place on 23 May in Brussels, to coincide with the ECRD Conference, saw Chair of GRDO, Avril Daly, re-elected to the Board of EURORDIS at the General Assembly, and subsequently elected as Vice President of the organisation.

Avril, who is CEO of Fighting Blindness, represents GRDO on the National Steering Committee established by the Irish Minister for Health in 2011 working on the development of a framework for a National Plan for Rare Diseases.  She is a member of both the Medical Research Charities Group (MRCG) and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) and represents Retina International and Retina Europe on the Board of the European Patients Forum

The EURORDIS Membership Meeting attracted over 200 participants from 43 countries to learn from each other and build their capacities to establish and monitor national plans and strategies in their own countries.

As well as voting at the General Assembly, participants had the opportunity throughout the day to share their experience on such important topics as: fundraising, advocacy, creating disease specific federations and networking through online patient communities. Member patient representatives also came to acquire the knowledge to better advocate for access to medicines, patient mobility, centres of expertise, compassionate use, registries and biobanks.

See EURORDIS announcement and activitiy report here

View the presentations here

See the photos here