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…
Workshop about Physiotherapy and Cervical Dystonia in Newcastle upon Tyne
A one-day course about physiotherapy and cervical dystonia for physiotherapists was organised on Friday at the Silverlink Hotel outside of Newcastle upon Tyne in the UK. 22 physiotherapists, most of them from the local area but also from all over the UK, had come for the course. Gill Ainsley, Secretary and Vice President of Dystonia…
Meet Elizabeth, Ireland
What is your name? Elizabeth Cunningham What are the benefits of working within a patient organization? I have been a communications professional with patient organisations for ten years and find it extremely rewarding. I came to this career because I live with a chronic neurological condition (migraine). From an early age, I knew that…
