This workshop, focusing on Patient Registries, will be the platform at the beginning of 2012 to call to all relevant stakeholders with a common aim and commitment to foster the establishment of Rare Disease/Rare Cancers Patient Registries throughout Europe.

The workshop will bring together a range of delegates, including rare disease patient representatives, health policy makers, researchers, politicians and the professional  community. It will provide an opportunity for the different stakeholders from various  communities to align on their specific objectives, on the basis of what they can bring to the table and the commitments they can make. Additionally, it will offer another opportunity for EU citizens and local, national and EU politicians to be made aware of the urgent need for collaborative framework for rare diseases registries in Europe.

Register now on the ECPC website. Registration will close on Friday, 20th January 2012.

 Proposed Agenda - Rare disease and cancer patient registries - January 25, 2012 (61.62 kB)