Rare diseases represent much more than the commonly discussed topic of orphan medicines and their impact on health budgets; in fact, they pose challenges in all areas of life for the entire lifespan of a person. Therefore, they need to be viewed in a more holistic manner in order to break the isolation experienced by patients themselves and their families. A European coordinated approach is the right way to tackle the challenges.
Françoise Grossetête (EPP, FR) is a member of the network of Parliamentary Advocates for Rare Diseases
I decided to join the network of Parliamentary Advocates for Rare Diseases to develop greater synergies with my colleagues working on rare diseases across the political spectrum, with the EU institutions and patients’ organisations, in order to continue the coordination work of the cross-border action in the field of rare diseases. This initiative addresses to a wider political call to the EU to become a place where all inequalities are addressed, reducing discrepancies in access to treatments. We are strongly committed in making this call a reality.
Elena Gentile (S&D, IT) is a member of the network of Parliamentary Advocates for Rare Diseases
Health, and in particular the rare diseases community, has been the poor relation of the Juncker Commission so far, but the term is not over. On the tenth anniversary of its communication on rare diseases, we are joining the 30 million patients across Europe to ask the Commission to up its game and deliver on its motto: ‘Going big on the big things that really matter to our citizens’.
Frédérique Ries (ALDE, BE) is a member of the network of Parliamentary Advocates for Rare Diseases