Dystonia often impacts every aspect of a person’s life, and learning to live with dystonia can be a profound adjustment. Many people with dystonia describe the process of diagnosis and everyday coping as riding a rollercoaster with dramatic ups and downs. Despite the challenges of living with the disorder, members of the dystonia community are resilient, inspiring people.
Please find below the links to other helpful organizations that support dystonia:
The Rare Disease Foundation: The Rare Disease Foundation’s mission is to revolutionize rare disease care through creating communities of patients, caregivers, health care providers and researchers that work together to transform the lives of those living with rare disease in Canada.
You can learn more about upcoming events and activities here.
Donate your brain for research
The Morton & Gloria Shulman Movement Disorders Centre and The Edmond J Safra Program in Parkinson’s Disease at Toronto Western Hospital are accepting brain donations from dystonia patients. To learn more, please click here.
For employment resources please click here.
Join or Lead a Support Group!
DMRF Canada is currently recruiting for Support Group Leaders and participants across the country. To learn more about what it takes to be a Support Group Leader, click on the job description below, or email Stefanie Ince, Executive Director: firstname.lastname@example.org
You can view our Support Group Leader Volunteer Job Description here.
You can view some resources on fundraising as a support group leader here.