Dystonia Europe
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Dystonia Europe is a non-profit organization registered in Belgium and serving the needs of everybody with an interest in dystonia. The Dystonia Europe Vision is a better quality of life for people living with Dystonia in Europe while supporting the search for a cure. Our mission is to provide the latest information and resources for our members and also be the source of information for the..
Dystonia Europe
1M ago
It is now over a year that you have been missed and you will always be missed. Your legacy and work live on in so many of our projects and activities. We are always so grateful for all you have done for the dystonia community. You brought energy, inspiration and a new vision to our ..read more
Dystonia Europe
1M ago
The following article, makes reference to certain companies and their products and any opinions expressed should not be taken to be the views of Dystonia Europe or its members. The article are written by respected authors and are provided for the information of Dystonia Europe News readers. The next-generation DBS technology is now available in a ..read more
Dystonia Europe
2M ago
After twelve (!) years of waiting and five (!) years of preparations we finally gathered in Dublin to convene the Samuel Belzberg 6thInternational Dystonia Symposium. After the Barcelona meeting in 2011, we heard that it was the best dystonia symposium people had ever attended; we hear now that the 6th one was even better! Three days ..read more
Dystonia Europe
2M ago
The Finnish Dystonia Association celebrated its 25th anniversary in September in Pori, Finland. As a nationwide organisation, we chose a new city as a venue. Approximately 50 members gathered to meet each other, to receive and provide peer support and to listen to interesting presentations by neurologists, physiotherapists, and rehabilitation psychologists. A ..read more
Dystonia Europe
2M ago
On Sept. 30th Associazione per la Ricerca sulla Distonia (A.R.D.) organised the 4th National Dystonia Day. In order to increase visibility and attention towards dystonia, in 2020 we decided to create a National Day to be held on the last Saturday of September, preceded by articles or interviews published via various means of communication. The ..read more
Dystonia Europe
2M ago
What is your name? My Name is Julia Kühne. I live in northern Germany, in a city called Rostock. What are the benefits of working within a patient organisation? Working in a patient organization is a very special experience to me, as it is the first time since I was diagnosed with Dystonia, I ..read more
Dystonia Europe
2M ago
Congress dinner was held at the Wasa Museum and here Monika is with Boston Scientific representatives Sophie Arajou and Yasmine Lafnoune The 15th ESSFN (European Society for Stereotactic and Functional Neurosurgery) Congress was held during the last week of September at the Waterfront Congress Center in Stockholm Sweden. This congress takes place every other ..read more
Dystonia Europe
2M ago
Have you ever used acupuncture, herbal medicine or any other alternative treatment for your dystonia? In this survey a research group from Dublin aim to investigate the use of non-traditional therapies (herbal medicines, acupuncture, CBD oil) in people with focal dystonias. The survey should take less than 10 minutes to complete and asks about the ..read more
Dystonia Europe
2M ago
Dystonia Physio Exercise Hub is an online platform for physiotherapists where they can create individual training programmes for their cervical dystonia patients. The platform is an initiative by Swedish physiotherapist Johanna Blom and Dystonia Europe, and funded by Boston Scientific Foundation. The digital tool was launched in Swedish first and very soon translated to five ..read more
Dystonia Europe
4M ago
Introduction: Our life journey is marked by ups and downs, challenges that test us, and moments that inspire us. In my case, a neurological condition known as Myoclonus-Dystonia Syndrome led me down a path of difficulty and self-doubt. This article tells my story and how, through resilience and willpower, I found the strength to keep ..read more