Cure HHT launches Canada arm to expand HHT care and awareness

Cure HHT has launched Cure HHT Canada to support people affected by hereditary hemorrhagic telangiectasia across Canada. The new organization is meant to improve diagnosis, education, access to specialized care, and community connection as HHT remains widely underdiagnosed. Why it matters: - Cure HHT Canada is designed to close gaps in diagnosis, care, and support for people living with hereditary hemorrhagic telangiectasia, a genetic blood vessel disorder that can affect multiple organs. - HHT is still widely underrecognized, with an estimated 80% of affected people undiagnosed. - Earlier diagnosis and faster access to specialized care can reduce the risk of serious, potentially life-threatening complications. What happened: - Cure HHT announced the launch of Cure HHT Canada on June 17, 2026. - The new organization will serve individuals and families affected by HHT across Canada. - Cure HHT said it worked closely with the Cure HHT Canada board over the past year to strengthen the organization and prepare it for launch. - More information is available on Cure HHT Canada’s website. The details: - HHT can affect the nose, lungs, brain, liver and gastrointestinal tract. - Recurrent nosebleeds are often the most visible symptom. - Cure HHT Canada will focus on awareness, community education and improving access to knowledgeable HHT care throughout Canada. - The organization will connect patients and families with reliable resources. - Cure HHT Canada will support research, advocacy and education efforts. - Cure HHT Canada aims to serve as a trusted national voice for the Canadian HHT community. - Cure HHT Canada President Jane Wace said the organization was built around the need for visibility, education, connection and hope. - Cure HHT CEO Marianne Clancy said the launch is a step forward in building support across Canada and strengthening collaborative work on diagnosis, care, research and connection. Between the lines: - The launch is part of a broader international push by Cure HHT to build stronger HHT support systems beyond the United States. - Cure HHT said the timing aligns with revised criteria for HHT Centers of Excellence across the United States, Canada and internationally. - That update is meant to help patients recognize symptoms, seek screening and reach specialized care faster. - The Canada launch also signals a more localized approach to patient support, which can matter in a rare disease where awareness and expert care are unevenly distributed. What’s next: - Cure HHT Canada and Cure HHT will work together to increase public and healthcare provider awareness of HHT. - The organizations plan to improve access to resources and support for families across the HHT journey. - Cure HHT Canada will continue building its role in education, advocacy and community connection. - The broader goal is earlier diagnosis, better care and more answers for patients and families affected by HHT. The bottom line: - Cure HHT Canada gives the rare-disease group a dedicated national platform to push for earlier diagnosis, stronger care pathways and better support for Canadian families.