What the HHT?
A blog for the HHT community
Posts by Valaree Machen
Seattle 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!
Read MoreFinal Days to Register! Denver Regional Conference
HHT Patient & Physician Conference
Denver, Colorado | March 25, 2023
Don’t miss your chance to connect with the local HHT community just outside Denver, Colorado in Aurora, on March 25, 2023, for a day of networking and learning for both patients and physicians. Medical professionals can now receive CME credits for participation. This is an in-person conference. Registration is now open.
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