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What the HHT?

A blog for the HHT community

Unexpected: Living with Crohn’s Disease, Depression…and HHT Too

Man, I don’t know where to start, so I’ll just jump right in: HHT (Hereditary Hemorrhagic Telangiectasia) is a rare illness and I’m one of the people who has it.  As a survivor, it is my duty to share my story — Life is Complicated I already had a complicated medical history—asthma, Crohn’s disease, depression—so…

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Sharing to make a difference

Recently I had an amazing opportunity to share my HHT story with a group of researchers from Recursion Pharmaceuticals as well as local medical professionals in the Salt Lake city area. It all started by saying ‘Yes’ to a Facebook invitation. I saw on Facebook that Cure HHT was looking for a patient to volunteer…

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How to Fundraise for Cure HHT on Facebook

This small, but mighty community can help Cure HHT deliver results for new HHT treatments, new HHT Centers of Excellence and new options that can help people manage their HHT much more quickly than ever before.   How? By sharing stories about their journey with HHT, advocating for this case and becoming a fundraiser on…

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