“I have met many really hard working and dedicated people here in Tübingen and learned more about how they already work within the network and what their ambitions and wishes for future are”, says an enthusiastic Astri Arnesen, EFNA Secretary General and ERN-RND patient representative. The network partners met in Tübingen in Germany at the…
EPF COMPAR-EU Final Conference Advocacy Event
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…
