The European Cancer Patient Coalition (ECPC) and Rare Diseases Europe (EURORDIS) joined forces in Janaury 2012 to hold a workshop in the European Parliament on the importance of patient registries for patients with rare cancers and rare diseases.
Accurate and detailed data is essential for planning and providing quality healthcare, and without efficient registries we cannot have accurate data. With over 20% of all cancer patients in the EU affected by a ‘rare cancer’ – including all children and teenagers with cancer – this is an issue affecting a large number of people across the EU. (The European Commission defines a rare disease or cancer as one that affects less than 1 in 2000 people).
With the support of Nessa Childers, Irish MEP, ECPC and EURORDIS presented to European legislators and regulators exactly why registries and data are important not only for healthcare professionals but for patients.
ECPC – http://www.ecpc-online.org/
EURORDIS – http://www.eurordis.org/