Dystonia Europe

10/06/2026

Dystonia Europe has the pleasure of running a training course for qualified physiotherapists in the treatment of cervical dystonia in the UK.
The course will be led by Johanna Blom who has 18 years experience treating dystonia and training other professionals. She has written a book about cervical dystonia and spasticity and in collaboration with Dystonia Europe has developed a digital platform for cervical dystonia with detailed descriptions and animations of treating cervical with .
This course will be held in The National Hospital for Neurology & Neurosurgery, Queen Square, London, WC1N 3BG on Saturday, 5th September, and any qualified physiotherapists from the area and beyond can apply to take the course.
Learn more and register here: https://dystonia-europe.org/2026/06/cervical-dystonia-physiotherapy-course-september-2026-london-uk/

09/06/2026

Dystonia Day 2026 took place on 30 May in Malmö, Sweden. The full day event featured patient testimony and expert presentations from:

🔸 Salvatore Caruso, Italy: 'Living with dystonia'

🔸 Prof Marina de Koning-Tijssen, Groningen: 'What it is & a focus on Myoclonus Dystonia'

🔸 Dr. Jonathan Ellenbogen, Manchester: 'Understanding DBS in Dystonia: Current Uses and Future Innovations'

🔸 Prof Bo Biering-Sörensen, Copenhagen: 'BoNT treatment: How it works and how can it be optimised'

🔸 Heike Unger, Berlin: 'Feasibility Study on the use of an AI Supported Torticollis App'

🔸 Prof Andreas Puschmann, Lund: 'When genetic testing helps in dystonia'

🔸 Prof Chi Wang Ip, Würzburg: 'Translational AI-based movement analysis in dystonia: From animal models to humans'

If you missed the live event, don't worry! You can watch all these presentations (and much more!) on the Dystonia Europe Youtube channel here: https://www.youtube.com/live/n-nM5G4Ygm4?si=A0dRKV2qV8prI3Tg

02/06/2026

Applications for Boston Scientific Foundation Europe grants are now open!

If you have an idea for a digital health project, we'd love to hear from you. We support non-profit organisations in Europe with innovative initiatives that can create meaningful impact for patient communities.

We pride ourselves on being approachable, so if you are considering applying for funding, or would simply like to discuss your project, please get in touch.

👉 Find out more and apply here: https://www.bostonscientific.com/en-EU/about-us/corporate-social-responsibility/people/foundation/criteria-guidelines.html?utm_medium=social-organic&utm_source=facebook&utm_campaign=corp-gen-emea-all-website-bsfe-application-en-gen-26q1&utm_content=car-fb01


Applications are now open until 30 September, the final opportunity to apply for funding in 2026.

01/06/2026

Dystonia Europe's Spring Newsletter is available to read now!
As usual it is full of news from the last few months as well as some research news.
There is also news of some of our projects and activities, including a training course we ran for physiotherapists in London, European Federation of Neurological Associations (EFNA) meetings, the Associazione Italiana per la Ricerca sulla Distonia - ARD (Italian Dystonia Society) anniversary, Finnish Dystonia Day and in Romania.
Read all this and more at the link below:
https://dystonia-europe.org/wp-content/uploads/2026/05/DE-News-1-Spring-2026.pdf

30/05/2026

Modern, steadily improving genetic tests are increasingly being used as diagnostic tools in . There are a number of well-described genetic forms of , but these are generally rare. Dystonia can also be a prominent symptom that is combined with other disease signs and symptoms within a large number of neurological syndromes, many of which have a genetic cause. In his presentation, Prof Andreas Puschmann of Lund University and Skåne University Hospital is describing the different known genetic forms of dystonia and explain when genetic testing can help to obtain a correct diagnosis.

Watch the conference livestream on the Dystonia Europe YouTube channel at https://www.youtube.com/watch?v=n-nM5G4Ygm4

30/05/2026

How wonderful to have so many representatives of the community with us here today- patients, medical professionals, researchers and industry partners.
To the group here and all those who are viewing from home, thank you for being with us.
Thank you also again to Ipsen and Merz Therapeutics who have made this day possible.

🎥 You can watch the livestream at https://www.youtube.com/watch?v=n-nM5G4Ygm4

30/05/2026

Botulinum neurotoxin (BoNT) remains the cornerstone treatment for focal dystonias, yet therapeutic outcomes depend heavily on precise targeting, individualised goal setting, and attention to the full clinical spectrum of the disorder.

In his presentation today, Prof Bo Biering-Sørensen reviewed the mechanism of action of and outlined strategies for optimising treatment, with particular emphasis on ultrasound‑guided injections and the COL‑CAP concept as key tools for enhancing accuracy and efficacy in cervical dystonia.
Because extends beyond motor manifestations, the often under-recognised non‑motor symptoms- such as pain, fatigue, anxiety, and sleep disturbances- were also highlighted as essential contributors to disability and quality‑of‑life outcomes.
Integrating structured, patient‑centered goal setting into clinical practice ensures that BoNT interventions align with what is most meaningful to the individual patient. This approach naturally underscores the importance of effective patient–physician communication, enabling collaborative decision‑making, enhancing satisfaction, and ultimately improving long‑term treatment success.

Our conference continues here in Malmo, and can be viewed live on the Dystonia Europe YouTube channel at https://www.youtube.com/watch?v=n-nM5G4Ygm4

30/05/2026

"Resilience is not something you are born with, it's something you choose every day. This is something that connects us as a community."
Salvatore Caruso, Board Member of Associazione per la Ricerca sulla Distonia (ARD) and Dystonia Europe, could sadly not be here with us in person today, but shared an incredibly powerful video testimony with us. How we wish you could have been here to feel the impact your words had on the people here, Salvatore, and no doubt on those watching from home too.
If you missed Salvatore's presentation you will be able to catch it soon on our YouTube channel. For now you can tune in there to watch the rest of our speakers live: https://www.youtube.com/watch?v=n-nM5G4Ygm4

30/05/2026

Our conference begins! We are live from Malmo, Sweden, via the Dystonia Europe YouTube channel. Watch the days events, featuring:

🔸 Salvatore Caruso (Person living with , Board Member of Associazione per la Ricerca sulla Distonia (ARD) and Dystonia Europe)
🔸 Prof dr Marina de Koning-Tijssen (Expertise Centre Movement Disorders,
Dep. of Neurology, University Groningen, the Netherlands)
🔸 Dr. Jonathan Ellenbogen (Consultant Neurosurgeon, Honorary Clinical Senior Lecturer, Alder Hey Children’s Hospital, Royal Manchester Children’s Hospital & Salford Royal Hospital)
🔸 Prof Bo Biering-Sørensen (Director, Clinical Associate Professor, Senior Consultant, Neurological Department, Copenhagen University Hospital), Heike Unger (Physiotherapist)
🔸 Prof Andreas Puschmann (Professor in neurology, Lund University, Neurologist, Skåne University Hospital) and Prof Chi Wang Ip (Deputy Director, Department of Neurology and Professor of Translational Neurology, University Hospital Wuerzburg)

👉️ Watch live now at https://www.youtube.com/watch?v=n-nM5G4Ygm4

Huge thanks to Ipsen and Merz Therapeutics, who have made this important day possible 🧡