In November EPF (European Patient Forum) held the final COMPAR-EU conference. COMPAR-EU is a multimethod, interdisciplinary project that will contribute to bridging the gap between current knowledge and practice of self-management interventions. The event was held in Brussels and lasted 2 days. In addition to the about 35 participants in Brussels there were EPF members…
What is the ERN-RND Network?
The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND) which requires very specialised knowledge, treatment and resources. Some diseases are so rare that the necessary knowledge might not be available in the patient’s nearest health centre or country. The patient doesn’t…
The Dystonia Network of Australia Inc.
Campbelltown RSL Jump The Dystonia Network of Australia Inc. (DNA) arose from a support group in the Blue Mountains area west of Sydney. It was incorporated as a national organisation in 2014 and is the peak body for people with all forms of dystonia in Australia. It is a registered charity and run by…
Ipsen Patient Advisory Board Meeting in Paris
At the beginning of November Ipsen organized a Patient Advisory Board Meeting in Paris. The goal was to share insights and give input on the Ipsen Patient Centricity Roadmap. The nine participants were patient leaders from both national, European and global associations. Facilitators from MediPaCe led the participants through various sessions on topics relevant to all…
MDS Awards to Dystonia Europe Medical Experts
Honorary Membership Award 2022 to Professor Marie Vidailhet The MDS Honorary Membership Award Program recognizes individuals who have made extraordinary contributions to the field of Movement Disorders or otherwise to the Society. Recipients of this prestigious award shall be entitled to lifetime MDS Membership. Marie Vidailhet is Professor of Neurology at Salpêtrière Hospital, Sorbonne University,…
