What the HHT?
A blog for the HHT community
Front Page Announcements
HHT June Awareness Month
Just one HHT diagnosis has the potential to save the lives of many! As a genetic disorder – passed down from parent to child – the diagnosis of HHT for a single family member can branch into answers and life-saving treatments for several generations of a family! When we say HHT awareness saves lives…it’s not an exaggeration.
Though we have made great strides in shining a light on HHT over the years, we still need your support to make HHT a more recognized disease! Donate today to help HHT Awareness take root in your community — plant the seed of awareness!
Read MoreSeattle National Conference
HHT Patient & Physician Conference
Seattle, Washington | June 3-4, 2023
Register today to join us for our National Patient & Physician Conference on June 3-4, in Bellevue, Washington just outside of Seattle. Medical professionals can now receive CME credits for participation. This is an in-person conference. Registration is now open.
Read MoreOne in a Million
One year ago today, I underwent a liver transplant due to a genetic condition called HHT (Hereditary Hemorrhagic Telangiectasia), or Osler-Weber Rendu Syndrome. Roughly 1 in 5,000 people are diagnosed with HHT. Of that 1 in 5,000, up to 75%, have liver involvement. Of that 75%, only 8% become symptomatic. The data gets spotty after this, and from my research, I can only find 59 documented cases since 1985 of liver transplantation related to HHT.
Read MoreBBC News: Jersey woman calls for more awareness of rare condition
BBC Jersey (UK) Jersey woman calls for more awareness of rare condition – “A Jersey woman who has a rare genetic condition that affects her blood vessels is calling for greater awareness of the disorder…Chelsea Ford, 27, is the only diagnosed case in Jersey but it is believed to affect about one person in every 5,000. “The fact it goes so undiagnosed, there could be people who do have it and don’t know what is wrong,” she said.
Read More14th Annual Stoner Open to Benefit Cure HHT
Spend the day on the green to support Cure HHT! Join Steve Stoner and friends at the Farmstead Golf & Country Club in Lafayette, NJ on July 7, 2023 for the 14th year in a row to support an important cause. Let’s make this year’s tournament the best yet!
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