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Information and Resources

Canadian Coalition for Genetic Fairness (CCGF): HSC chairs this alliance of 15 organizations dedicated to educating Canadians about genetic discrimination and pushing for positive change at the federal and provincial levels.

ENROLL-HD: Enroll-HD is a platform that allows health care professionals, scientists, and families affected by HD to work together towards a better understanding of HD and identify effective treatments. Their objective is to create the world’s largest database for clinical research on HD, eventually including information from as many as 20,000 people in around 33 countries. www.Enroll-HD.org

 European Huntington’s Disease Network (EHDN): A critical partner “across the pond,” the EHDN provides a forum for working together and advancing clinical trials and research.

Health Charities Coalition of Canada (HCCC): As an executive member of the HCCC, HSC collaborates with more than two dozen other national charities to share best practices and advocate for better health policies in Canada.

HealthPartners: Being a part of this workplace giving program has raised significant funds for HSC and increased the awareness of HD across Canada. HSC is a proud partner of Healthpartners Canada, a group of sixteen of Canada’s most trusted health charities, who offer employees and retirees the opportunity to invest in direct services; public education; health promotion; and research through our unique partnership.

HD Buzz: HSC is proud to be a founding funder and ongoing supporter of this international initiative. The cost-effective and one-of-a-kind service delivers the latest HD research news in easy-to-understand language and is helping spark interest in upcoming clinical trials.

Huntington’s Disease Society of America (HDSA): HSC shares a close relationship with our counterparts south of the border. Whether collaborating through the International Huntington Association or through one-on-one projects like The Physician’s Guide, our partnership continues to thrive.

Huntington Study Group The non-profit Huntington Study Group (HSG) was formed in 1993 by a small group of neurologists and researchers led by Dr. Ira Shoulson (University of Rochester). HSG carries out cooperative therapeutic research in order to advance knowledge about the natural history and treatment of HD. www.Huntington-Study-Group.org

HDTrials.org HDTrials.org has been created to enable clinical trial participation; the HDTrials.org web site will provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list. www.HDTrials.org

Huntington’s Disease Youth Organization (HDYO): HSC is a founding funder of this online community, which brings together young people affected by HD from around the world. By pooling our resources with other HD organizations to support HDYO, we are able to give youth a voice and deliver age-appropriate information and resources.

Huntington Society of Quebec (HSQ): HSQ serves the distinct needs of Quebec while maintaining strong links with HSC. An HSQ representative sits on our board of directors, and we partner to ensure all Canadians have access to the services they need.

International Huntington Association (IHA): HSC is a founding member and a current board member of this global forum dedicated to sharing best practices and resources with other HD organizations around the world.

Neurological Health Charities Coalition of Canada (NHCCC): By leveraging the collective strength of more than 20 organizations, including the HSC, this coalition works to influence federal policy and improve the lives of people with neurological diseases and their caregivers.


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