Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

EURORDIS Membership Meeting (EMM) 2012 Brussels

June 2012

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 the USA, Canada and all the way from Venezuela also took an active part!