On 29-30 May 2018, the European Medicines Agency (EMA), RD-ACTION (the European Joint Action for Rare Diseases) and the European Commission’s Directorate General for Health and Food Safety (DG SANTE), held a workshop to explore how to work together with the European Reference Networks (ERNs) in the field of complex and rare diseases. The workshop looked at how EMA and ERNs can reinforce each other’s efforts to encourage and facilitate research into new treatments for rare and low-prevalence complex diseases and how ERNs could be engaged in EMA activities.
Maurizio Scarpa, the coordinator of MetabERN and chairman of the board of ERNs, was present at this meeting to discuss the ERN’s: where we are and where we hope to go.
Jean Michel Heard, a member of MetabERN, presented the MetabERN (ERN on hereditary metabolic disorders) and the results from the survey discussed in Frankfurt during the board meeting.
