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…
New Podcast Episode: Mikko Juutinen on Pivoting Your Career and Hobbies With Dystonia
In the latest episode of ‘The Positive Twist’ podcast we meet Dr Mikko Juutinen, a former practicing dentist who has been diagnosed with dystonia in his hands, legs, calves and back. His diagnosis has led to pivoting in his career, as well as in some of his hobbies. Listen to this inspiring story of overcoming…
Upcoming webinar on “Children, Dystonia & DBS” – Wednesday, January 29, 2025
We are excited to share that Dystonia Europe is hosting an upcoming webinar focusing on “Children, Dystonia & DBS”. This event, taking place on Wednesday, January 29, frmo 18.00-19.30hrs CET, promises to shed light on important aspects surrounding childhood dystonia and the potential benefits of Deep Brain Stimulation (DBS) procedures. Childhood dystonia can present unique…
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…
