Welcome to the home of HHT Canada THH. We invite you to browse our site to learn more about HHT and the care available in Canada. This site contains information for Canadians with HHT, concerned family members and physicians involved in the care of patients with HHT.
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Dear Members, Family and Friends,
We have some very exciting news!
HHT Canada THH is active and will resume its goal of becoming a hub for HHT awareness and education, supporting affected families and individuals, and raising funds for HHT research and healthcare in Canada.
With a new Board of Members, HHT Canada THH is stronger than ever and ready to serve the HHT community!
Please feel free to contact us at email@example.com for any questions.
What is HHT?
Hereditary hemorrhagic telangiectasia (HHT), also known as Osler–Weber–Rendu disease and Osler–Weber–Rendu syndrome, is a genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver, and brain.
It may lead to nosebleeds, acute and chronic digestive tract bleeding, and various problems due to the involvement of other organs. Treatment focuses on reducing bleeding from blood vessel lesions, and sometimes surgery or other targeted interventions to remove arteriovenous malformations in organs. Chronic bleeding often requires iron supplements and sometimes blood transfusions. HHT is transmitted in an autosomal dominant fashion, and occurs in one in 5,000 people.
The disease carries the names of Sir William Osler, Henri Jules Louis Marie Rendu, and Frederick Parkes Weber, who described it in the late 19th and early 20th centuries.
Read more at Wikipedia.
What Is the HHT Outcomes Registry?
The HHT Outcomes Registry, links together all North American HHT Centers, therefore increasing the number of patients twenty times over what any single HHT Center could gather and analyse data through research which makes the Registry a powerful resource. The HHT Outcomes Registry’s short-term goal is to recruit 1000 HHT patients in the first year, with 500 data fields per participant, while the projected annual recruitment rate is 1,000 per year with an expected maximum of 80,000 patients. Funding of this registry is another example of Cure HHT’s goal to transform this disease to advance therapies that are more effective, accelerate discovery, and cure HHT. Please visit CureHHT.org for more information on the HHT Outcomes Registry.