Dystonia Association, Support, & Information - Alberta , CA

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Dystonia Association, Support, & Information - Alberta , CA "Community" makes us strong! "Nothing so concentrates experience and clarifies the central conditions of living as serious illness." Arthur Kleinman

22/10/2025

Invisible disability week

20/10/2025

🧠This , we highlight the often-overlooked impact of living with a rare disease on mental wellbeing.

The connection between physical and mental health is complex, with each influencing the other. Mental struggles can manifest physically, just as poor physical health can impact mental wellbeing leading to elevated rates of depression, anxiety, and stress amongst our community. Additionally, many rare diseases also manifest with a mental health condition as a comorbidity.

👉 That is why mental health must be part of the conversation!

Read more about what it’s like to live with a rare disease: https://go.rarediseaseday.org/mentalhealth

20/10/2025

Do you have questions about ? Now is your chance to ask the experts!
On Wednesday, 30 October, 2025, from 18.00 – 19.30hrs CET, Dystonia Europe will hold a webinar with three dystonia experts, and the audience will be invited to share their questions with them.
Our expert panelists are:

🔸 Prof Alfonso Fasano – Prof of Neurology at Toronto Western Hospital, University of Toronto, Canada and Humanitas University, Milan, Italy

🔸 Dr. Anna Castagna – Head of Movement Disorder Center and Botulinum Toxin Clinic at Fondazione Don Gnocchi Research Hospital, Milan, Italy

🔸 Professor Emeritus Marjan Jahanshahi – UCL Queen Square Institute of Neurology, Department of Clinical and Movement Neurosciences, The National Hospital for Neurology & Neurosurgery, UK

💬 You can ask your questions in the comments below, or email sec@dystonia-europe.org.

👉 Register for the webinar at https://lnkd.in/eC6zfYQq to hear the experts' responses!

17/10/2025

This Saturday, the Toronto Dystonia Support Group will be lacing up for those living with dystonia and their loved ones — raising awareness at the largest run in Toronto! 🏃♂️💙

There’s still time to show your support!

Your donations help improve quality of life for affected individuals and families through dystonia research and patient support programs.

Donate or share this message to spread the word. 👉 To donate, visit - https://raceroster.com/events/2025/95235/2025-tcs-toronto-waterfront-marathon/fundraising-organization/79431?aff=6ZUCT

15/10/2025

💙 Two Weeks to Go! 💙

In just two weeks, we’ll gather for the BEBRF Symposium — a weekend of learning, connection, and hope for everyone affected by blepharospasm.

This event brings together patients, researchers, and advocates who are working every day to better understand and manage this rare condition. Whether you’re newly diagnosed or have been part of the BEBRF family for years, there’s something valuable waiting for you.

Don’t miss the chance to connect, share your story, and learn what’s next in treatment and research.

👉 Reserve your spot today:
https://bebrf.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F21539

15/10/2025

💙We’re committed to making Rare Disease Day content as inclusive as possible.

Our webinar from last year, 'Enhancing Accessibility in Physical and Digital Spaces' has been re-released on YouTube with subtitles in 12 languages to ensure more voices can join the conversation.

Learn from accessibility experts about the barriers in, but most importantly the solutions to, creating accessible physical and digital spaces for people in the rare disease community.

👉 Watch now and share with your networks: https://www.rarediseaseday.org/webinars/

Aniridia Network European Disability Forum ČAVO - Česká asociace pro vzácná onemocnění

15/10/2025

Good morning, Warriors. Fatigue steals our everyday existence, and in my opinion is the worst part of having any chronic illness.

Please be kind to yourselves and know that you are not alone! ~ It's okay to not be okay ❤️ Danie

15/10/2025

Good video.

12/10/2025

Dystonia Europe has the pleasure of running a training course for qualified physiotherapists in the treatment of Cervical Dystonia. The course will be led by Johanna Blom who has 18 years experience treating dystonia and training other professionals.

🏢 Venue: The National Hospital for Neurology & Neurosurgery, Queen Square, London, WC1N 3BG
📆 Date: Saturday, 7th March, 2026
🕗 Time: 8.30am till 4.00pm.

The course will only be £25/€30 per person which includes all refreshments and lunch on the day.

👉 Learn more and register here: https://dystonia-europe.org/projects-1/education-training/physiotherapycourse-march2026/

12/10/2025

Living with dystonia requires strength and resilience every day.
This , remember that you are not alone in this journey. Together, we can support and uplift each other.
Visit dystonia-europe.org for reliable information and join the conversation with us here on social media.

12/10/2025

Individuals diagnosed with dystonia commonly experience symptoms that affect more than how the body moves. The impact of dystonia can go far deeper than motor symptoms and may affect a person’s emotional and mental health. On and every day remember that it is OK to ask for help to address your non–motor symptoms. https://dystonia-foundation.org/living-dystonia/mental-health/

12/10/2025

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