EC workshop takes stock of future rare disease research needs
A workshop dedicated to the future research needs of the Rare Diseases Community took place on 14 June at the Directorate General (DG) Research headquarters in Brussels. Participants consisted of Sixth Framework Programme (FP6) project leaders in the field and representatives of various EU services. An analysis of past achievements revealed that the previous programme had proved efficient in mobilising top researchers, tackling fragmentation and contributing to the dialogue between all the stakeholders, including patients. ERA-NET project E-Rare was presented as a successful example of integrating Member State resources for the benefit of all. However, despite these achievements, there is plenty of room for improvement. Amongst the items most discussed was the sustainability of shared resource platforms. The EC representatives made it very clear that there was no mechanism in place to continue funding databases and databanks. The need for a support for the early clinical development of therapeutic products was also discussed at length and appears to have been well received. Participants suggested that the next Call for Proposals should continue funding projects on the natural course and pathophysiology of Rare Diseases, but in areas other than those covered by the first call. The next call will open in 2008. Participants were very satisfied to see that several of the Directorate Generals (DG Research, DG Public Health and DG Enterprise) and the EMEA were making a concerted effort to coordinate their actions. Finally, DG Public Health announced that certain FP6 and FP7 project leaders will be invited to join the Rare Diseases Task Force.