Dystonia Europe participated at “Shaping the Future: Policy Responses to Neurological Challenges” 19 February 2025 at the European Parliament, a meeting of the MEP Interest Group on Brain Health and Neurological Conditions at the European Parliament this week, kindly hosted by Billy Kelleher MEP. This meeting was arranged by EFNA (European Federation of Neurological Associations)….
New Podcast Episode: Amybel Taylor on the pros and cons of DBS surgery for dystonia
In this episode, we sit down with DBS patient Amybel Taylor as she shares her journey of being diagnosed with dystonia at a very young age. After years of living with the condition, Amybel, with the support of her parents, made the life-changing decision to undergo DBS surgery. Now in her early 30s, she has…
Exhibitions and Initiatives of the Children’s Joy Association Dedicated to Rare Disease Days
The Children’s Joy Association is committed to standing for patients with Dystonia and is a member of the National Alliance for Rare Diseases being a part of its Board. Some forms of neuromuscular Dystonia are considered rare diseases and the association plays an active role in supporting patients and raising awareness about these conditions. In…
Children, Dystonia and DBS Webinar
Monika began by welcoming us all to this webinar on Children. Dystonia and DBS organised by Dystonia Europe. She explained that we have 3 speakers, Sarah Perides Advanced Nurse Practitioner, Dr Margaret Kaminska both from the Evelina Children’s Hospital and Alfonso Fasana from the Toronto University Hospital. We had hoped to have a patient too…
Online Dystonia Day Conference September 2024
The Dystonia Europe Board decided that this year our annual conference day would be held online using zoom. We used this method during the covid restrictions and not only did it work really well it was also a great deal cheaper than a face to face meeting. We all still prefer face to face meetings…
