Our congratulations to Dr. Michael Zech, from the Institute of Human Genetics, Technical University of Munich and the Institute of Neurogenomics, Helmholtz Zentrum München, in Munich, Germany and the David Marsden Award 2023 for his paper: Biallelic AOPEP Loss-of-Function Variants Cause Progressive Dystonia with Prominent Limb Involvement. Last July Dr. Zech was presented with the…
Webinar on DBS for Dystonia
Last June there was a webinar on DBS (Deep Brain Stimulation). This webinar was mainly for patients and focused on the benefits of DBS for dystonia patients that does not have sufficient effect from other treatments like for example botulinumtoxin and other medication. After Edwige Ponseel, President of Dystonia Europe opened the webinar and welcomed…
Dr. Michael Zech Receives the David Marsden Award 2023
Our congratulations to Dr. Michael Zech, from the Institute of Human Genetics, Technical University of Munich and the Institute of Neurogenomics, Helmholtz Zentrum München, in Munich, Germany and the David Marsden Award 2023 for his paper: Biallelic AOPEP Loss-of-Function Variants Cause Progressive Dystonia with Prominent Limb Involvement. Last July Dr. Zech was presented with the…
Dystonia Webinars
On several occasions we have asked you, our followers, what you want to see and hear from Dystonia Europe. And the list is long. Many of you wish to hear from other dystonia patients and how they manage their dystonia. You also want to have information on treatments and research. We have therefore decided to…
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…
