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…
Publication on Dystonia: Dystonia Management across Europe within ERN-RND: Current State and Future Challenges
Liesanne M. Centen,#1,2 David Pinter,#3 Martje E. van Egmond,1,2 Holm Graessner,4 Norbert Kovacs,3 Anne Koy,5Belen Perez-Dueñas,6 Carola Reinhard,4 Marina A. J. Tijssen,1,2 and Sylvia Boesch7 Background Since the first European-wide evaluation of dystonia management in 2016, several efforts have been made to improve dystonia-care. One of these was the development of the Dystonia Disease Group as a part of the European Reference Network for…
ERN-RND ePAGs Visiting Crona Clinic in Tübingen
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 much 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 travel but knowledge…