The Euro-Russian Myology CourseDecember 12, 2019
(May 16-19, Moscow, Russia)
Attendees: round 200 professionals, mostly doctors, but also researchers, representatives of pharmaceutical companies and patients organizations.
In April 2018 I got an unexpected invitation to make a presentation about FSHD for a group of (mainly) Russian doctors during a Myology Course that was going to take place in Moscow in May.
I was surprised by this invitation as I am neither a doctor nor a researcher but the organizers of the course thought that it would be interesting to get a patient perspective on the disease. For me it was an excellent opportunity to meet Russian patients, hopefully establish a contact with them and eventually help them to organize an FSHD patients group in Russia, so I agreed. My presentation included a few technical slides (which I borrowed from Dutch researchers and doctors) but also recent developments in the patient care, personal experience with the disease and patients organizations activities in the Netherlands and in Europe. I also paid special attention to the Guidelines for FSHD recently developed in the Netherlands in cooperation with doctors, researchers and patients. The document is available in Dutch only at this moment but we are planning to have it translated into English and published on the FSHD Europe website this year. Hopefully it can become an international standard of care in as many countries as possible.
After my presentation I had a very productive talk with the representatives of I-MIO Project Team: patients organization in Russia for Neuro Muscular Diseases. We have exchanged few emails since the meeting where we have discussed the possibilities for our cooperation and possibilities for creating FSHD subgroup within I-MIO organization.