Learning from Each Other at EURORDIS Membership Meeting 2012 Brussels

EURORDIS Membership Meeting took place on May 23 in Brussels, in conjunction with the European Conference on Rare Diseases and Orphan Products (ECRD 2012 Brussels). The event 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.

Throughout the day participants shared 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.

The Membership Meeting was also the opportunity for our members to vote at the General Assembly and meet and socialise in a more informal setting.

Delegates came from all over the EU, as well as from other parts of the European continent including Croatia, Georgia, Ukraine and a large delegation from Russia. Friends from USA, Canada and all the way from Venezuela also took an active part!


View the programme

View the presentations

Great networking! See the photos


Page created: 05/06/2012
Page last updated: 24/10/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases