HHT Awareness Month Newsletter

Dear HHT Community,

We have some exciting news to share and we hope you pass this on to your friends and family!

June is HHT awareness month, with Global HHT Awareness Day on June 23. HHT Canada THH has been busy preparing for this momentous occasion. Read on to learn more!

Every Friday in June we will post HHT Facts or Fiction to continue to spread awareness and information about our rare disease — HHT.

Check out how we plan to light up Canada for June HHT awareness! Click for the dates of our lighted landmarks and photo contest information! You can also visit the Events section of our Facebook page for lighted landmark locations and times.

One of our goals we have been busy working on is supporting the development of expert physicians and other healthcare team members by creating a Scholarship Fund for training. Canadians with HHT need better access to expert care, and we believe the first step is educating health professionals in HHT Care. Please click to learn more. Share this information with friends and family and encourage them to support this much needed investment; let’s work together to support the development of HHT Centres of Excellence in Canada.

HHT Canada THH along with CureHTT (American non-profit charity) are working together to develop a North American Patient Registry. The registry contains detailed clinical information about all aspects of HHT, including everything from nosebleeds to genetics, and follows people through the course of their disease. Please click here to learn more about this very important registry. Currently the Toronto HHT Centre is the only funded registry in Canada. We hope to raise $20,000 to expand recruitment centres across Canada to collect this very important information.

Fundraising — to support our scholarship goal, we are planning a bike-a-thon in September 2019. Many thanks to Alison Beder Solway of Ontario, who has offered her gym and time to support our scholarship goals. More information regarding dates and times will be coming soon! Keep active and get biking!

Other fundraising ventures are in the works and will be posted as soon as they are finalized.

We encourage our HHT community to contact us if they would like to volunteer at our fundraisers or would like to organize their own fundraiser. We are here to help and look forward to collaborating with you!

Western HHT Canada THH Patient Conference. YES!! We from the board of HHT Canada THH are excited to share with you our plans for a Spring 2020 Western Conference in Edmonton, Alberta. Early planning of the program and speakers is underway and we look forward to seeing many of you next spring! Stay tuned!