Dystonia Europe

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Dystonia Europe

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.

12/08/2026

What is your experience regarding driving and dystonia in your country? Dystonia Europe board member Salvatore Caruso has shared an article with us on this topic. Read it here:
https://dystonia-europe.org/2026/07/driving-license-and-dystonia-maintaining-mobility-ensuring-quality-of-life/

Let us know about your own experiences in the comments below.

10/08/2026

Sarah Perides is an Advanced Nurse Practitioner within the Complex Motor Disorder Service at Evelina Children’s Hospital in London, caring for children and young people living with dystonia and movement disorders. Her core responsibilities include patient education and support, medication management, comprehensive patient assessment, and the programming and management of and devices.
Read Sarah's blog post here: https://dystonia-europe.org/2025/09/sarah-perides-advanced-nurse-practitioner/

07/08/2026

"I’m using my voice, the voice that I once lost to raise awareness. I had all my abilities taken away from me at 13 but one thing my condition could never take from me is my determination. I’ve been determined to not let my disability hold me back."
Read the incredibly powerful story of Liam Virgo, from the United Kingdom, who over the course of a few days in 2016, went from being a healthy teenager to one who couldn’t move or even speak: https://dystonia-europe.org/2026/05/meet-liam-virgo-my-dystonia-story/

05/08/2026

In a recent episode of The Positive Twist podcast, we sat down with patient Amybel Taylor as she shared her journey of being diagnosed with at a very young age. After years of living with the condition, Amybel, with the support of her parents, made the life-changing decision to undergo DBS surgery.

Now in her early 30s, she has recently undergone another procedure to update and replace her wires and device. In this candid conversation, Amybel opens up about the pros and cons of DBS surgery for dystonia.

Listen to the episode here: https://dystoniaeurope.buzzsprout.com/1337749/episodes/16631516-the-pros-and-cons-of-dbs-surgery-with-dbs-patient-amybel-taylor

03/08/2026

📗 The popular and richly-illustrated book ”Muscle Imbalance” is now available in an updated and English version.
Written by Physiotherapist Johanna Blom, it is primarily intended for physiotherapists but can also be used by other healthcare professionals who meet patients with tonus problems in the form of or spasticity. It constitutes an important new tool that should result in better assessment and treatment for a large group of patients.
🔗 You can order the book here:
https://dystonia-europe.org/buy-muscle-imbalance-book/

29/07/2026

🔸 Last chance to register!! 🔸

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/
The closing date for registrations is July 31.

28/07/2026

💪 Physiotherapy is an important part of treatment, alongside botox injections, medications and possible treatment. The brain has a capacity for remodelling, and training aims to influence the remodelling process in the right direction, with effects on head control and reduction of excessive tension. In addition, the exercises can contribute to lengthening of the tense short muscles, relaxation, reduction of pain, attenuation of head shaking, corrected posture and improved coping skills.

👉 Learn more about for on our website here https://dystonia-europe.org/about-dystonia/treatments-dystonia/physiotherapy/ or find an experienced physiotherapist in your area using our Physio Finder: https://physioexercise.org/en/search

23/07/2026

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/
The closing date for registrations is July 31.

22/07/2026

❓️ What is ?
🧠 Dystonia is a neurological movement disorder characterised by involuntary muscle contractions that cause repetitive movements or abnormal postures. These contractions can affect a single muscle, a group of muscles, or the entire body, and they often result in twisting, tremors, or sustained abnormal positions.
👉 Learn more at https://dystonia-europe.org/

20/07/2026

treatment is reserved to those people who, despite periodic injection with botulinum toxin, still have disability and poor quality of life due to cervical dystonia. Only a few patients are eligible for this treatment, but they may gain great benefit. Learn more at https://dystonia-europe.org/about-dystonia/treatments-dystonia/deep-brain-stimulation-dbs/

Adresse

Square De Meeus 37/4th Floor
Brussels
1000

Téléphone

+46739984961

Site Web

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

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