Following the 11th European Conference on Rare Diseases and Orphan Products (ECRD) that was held from June 27th to July 1st and was organized by EURORDIS and co-organized by Orphanet with IRDiRC serving as an Associate Partner, the involved parties came together to write an open letter to Commissioner Kyriakides of the European Commission, calling for a European Action Plan on rare diseases.
The objective of this letter was to reiterate that this is a request from the wider community. 58 organisations – including the European National Alliances – signed the letter, representing learned societies, ERN coordinating centres, health and research groups and initiatives, and industry umbrella groups.
More information, as well as the letter and the list of signatories, is available here.