Figure 1

Scheme illustrating interactions of EBB with European organisations and networks. Coordination of RD-Connect is lead by Hanns Lochmüller, who has also been the coordinator of TREAT-NMD; coordinator of the Telethon Network of Genetic Biobanks is Mirella Filocamo; coordinator of BBMRI during the preparatory phase was Kurt Zatloukal, now BBMRI-ERIC has a general director which is Jan-Eric Litton; EURORDIS is coordinated by a Board of Directors composed of elected RD patient organization representatives from countries around Europe (www.eurordis.org); IRDiRC is governed by an executive committee, three scientific committees and a number of working groups (www.irdirc.org).