Dystonia Europe

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The European patient organization for the neurological movement disorder Dystonia. The Dystonia Europe page is open to everyone.

For more information visit www.dystonia-europe.org or contact [email protected] Patients and their relatives, medical experts, researchers, partners, investors or otherwise connected - a warm welcome to our community! Please join the discussions and feel free to ask questions. We look forward to sharing news, information and contacts, offering support and facilitating meet-ups.

14/10/2026

What is ?
In the context of , dysphonia refers to a voice disorder caused by involuntary spasms of the muscles in the voice box (larynx), leading to interruptions and changes in voice quality.
In his presentation for 2024, Dr. Jens Oyvind Loven from Oslo explains his work in this area and how the condition can be treated using (Botox).
📺 Watch the presentation here to learn more: https://youtu.be/c30cFInQiSo?si=7p4vdbC7yNPj10DL

13/10/2026

Today, we held our 22nd Think Tank meeting with our Platinum Partners, Boston Scientific, Medtronic and Ipsen, together with the Dystonia Europe team.

It was a full agenda, with updates on Dystonia Europe’s activities over the past months and plans for the months ahead.

We spent extra time reflecting on the recent Dystonia Awareness Month and the great success of the campaign. We exchanged ideas on how to further develop and strengthen the campaign for next year, building on its success and reaching even more people.

The meeting was filled with inspiring discussions, valuable input and great ideas from everyone around the table. A big thank you to all our partners and team members for your active participation, commitment and continued collaboration!

We look forward to continuing this important work together and meeting again for our next Think Tank, which will take place face-to-face in mid-March 2027.

Together, we can continue raising awareness of dystonia and making a difference for everyone affected by the condition. 💙

08/10/2026

Today at an online Patient Advisory Board meeting organized by Boston Scientific EMEA our Executive Director had the pleasure to talk about our DystoniaPhysioExerciseHub project - the online platform where physiotherapists can create personalized home exercise programs from over 100 exercises, for their dystonia patients!
We are very proud of this project which has already shown significant impact to fill a gap in the Dystonia treatment journey by building capacity among physiotherapists and providing a tool for the patients to better manage their symptoms and hopefully have an improved quality of life!
We are grateful for the valuable support from Boston Scientific Foundation Europe making this project possible 🙏🏻🧡

07/10/2026

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

05/10/2026

Didn't get a chance to take part in the 'More Than Dystonia' campaign during ? There's still time!

The campaign doesn't end here. We encourage everyone in the dystonia community to keep sharing their experiences and helping us raise awareness throughout the year. Your voice can help shine a light on the realities of living with and increase understanding of this often misunderstood condition.

👉️ Visit the campaign page to learn more and access our campaign toolkit, including templates and resources available in multiple languages: https://dystonia-europe.org/morethandystonia/

01/10/2026

As Dystonia Awareness Month 2026 comes to a close, we want to say a heartfelt thank you to everyone who took part in the campaign 🧡

Whether you shared your story, posted a photo, or simply helped spread the word, your voice has helped shine a light on the realities of living with and increase understanding of this often misunderstood condition.

Didn't get a chance to take part? There's still time! The campaign doesn't end here. We encourage everyone in the dystonia community to keep sharing their experiences and helping us raise awareness throughout the year.

👉️ Visit the campaign page to learn more and access our campaign toolkit, including templates and resources available in multiple languages: https://dystonia-europe.org/morethandystonia/

01/10/2026

What an incredible 2026! 🧡

Together, our community helped us achieve remarkable growth across our social media channels:
✅ 128 posts shared (+205%)
✅ Reactions increased by 351%
✅ Comments increased by 939%
✅ Shares increased by 375%
✅ Engagement rate grew by 33%

Most importantly, thousands more people learned about through your likes, comments, shares, stories and conversations.

Thank you to everyone who engaged with our content, shared their experiences, participated in the campaign, and helped raise awareness throughout September. Your support makes a real difference and helps ensure that more people understand what it means to live with dystonia 🧡

30/09/2026

It's the last day of . Thanks to all of you who have helped to raise awareness and understanding of this month, by sharing and resharing posts, leaving comments and engaging with us and the wider community. Every action increases visibility and strengthens our collective voice.

We finish the month with a fabulous blog post by Malky, who lives in the United Kingdom.

"I am Malky. I am a student pilot, a Pooleys ambassador. I completed my aerobatics wing walk this summer. I am the cool friend, sister, aunt that flies planes. I am more than Dystonia. Dystonia is only one part of who I am. I choose to focus on what I can achieve in the skies as a student pilot and strapped to the wing of a biplane, rather than where my diagnosis holds me back.”

Read Malky’s full story here: https://dystonia-europe.org/2026/09/dystonia-is-only-one-part-of-who-i-am/

29/09/2026

Are you a working on ?
Apply now for the David Marsden Award 2027, and your opportunity to win €10,000 towards your research!

The award was introduced by Dystonia Europe in 2003 and is presented every year to stimulate research on dystonia, especially by young scientists in Europe. Professor David Marsden (1938 – 1998) was one of the leading neurologists in Europe and we wish to honour the enormous part he played in developing knowledge of and interest in dystonia.
Learn more and apply here: https://davidmarsdenaward.org

Ern-Rnd European Reference Network for Rare Neurological Diseases Resident and Research Fellow Section of European Academy of Neurology European Academy of Neurology World Federation of Neurology - WFN World Federation of Pediatric Neurology International Parkinson and Movement Disorder Society

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Square De Meeus 37/4th Floor
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Téléphone

+46739984961

Site Web

http://www.dystonia-europe.org/

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