On the last Sunday of October, participants of the European Reference Network for Rare Neurological Diseases (ERN-RND) gathered in Tutzing for the network’s 9th Annual Meeting. Prof. Holm Graessner, network coordinator, welcomed everyone and opened the meeting with an overview of the network’s activities. The ERN-RND team then shared updates on current projects. Carola presented focused initiatives…
ERN-RND Network Annual Meeting 2024
On 10 and 11 of October the Annual Meeting of the ERN-RND network took place in Ljubljana in Slovenia. About 60 experts from all over Europe travelled to take part while 30 participants and some of the speakers joined via Zoom. Local organiser Dr. Ales Maver and ERN-RND project leader Prof Holm Graessner from Tübingen,…
Cervical Dystonia Patient Journey Performance at EAN Congress
At the beginning of July the EAN (European Academy of Neurology) 2023 Congress was held in Budapest, Hungary. DE Executive Director Monika Benson attended the event. As reported earlier Dystonia Europe has together with Ipsen and ERN-RND (European Reference Network for Rare Neurological Diseases) developed the Cervical Dystonia Patient Journey which was published in 2022….
Meeting with the European Reference Network for Rare Neurological Diseases (ERN-RND)
“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…
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…
