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 Benign Essential Blepharospasm Canadian Research Foundation (BEBCRF) has amassed a large body of information on the symptoms and treatment of Benign Essential Blepharospasm from expert medical professionals. This in-depth information can be accessed through their website, here: http://www.blepharospasm.ca/medical_info.
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.
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: email@example.com
You can view our Support Group Leader Volunteer Job Description here.
You can view some resources on fundraising as a support group leader here.