Posted by George Shaw on Dec 1, 2016
The recent European Neuromuscular Center (ENMC) workshop on FSHD global registries was a general success. Greg Block (Friends of FSH Research) and June Kinoshita (FSHD Society) worked closely with the co-organizers of the workshop to develop the proposal and workshop program, and Kees van der Graaf (Stichting FSHD) and June attended the workshop as patient advocacy representatives.
Greg Block and Karla Blonsky also performed the initial survey of FSHD registries around the world, fund by Friends. The FSH Society, FSHD Stichting, Friends of FSH Research, and FSHD Canada sponsored travel grants to enable researchers to attend the workshop. FSHD Stichting and the FSH Society also sponsored dinners, and FSHD Stichting hosted a wine tasting for the workshop attendees.
The combined efforts of all the organizations contributed directly to fostering a new level of communication internationally among researchers working on registries and clinical trial readiness.