What the HHT?
A blog for the HHT community
Front Page Announcements
BBC 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 MoreIron and HHT: Boosting Your Health & Energy with Iron-Rich Foods (RECORDED)
Calling all foodies! Grab your apron and head to the kitchen to join registered Dietitian Nutritionist Kat Benson for our most sizzling online education opportunity yet, as she leads you through an interactive cooking demonstration! Kat discuses the importance of iron in the body, the correlation between iron deficiency and HHT, the best dietary sources of iron, and everyday foods that can trigger bleeding…
Read MoreSingapore General Hospital Certified as HHT International Treatment Center
Increasing access to specialized care is an important part of Cure HHT’s mission. We’ve made significant progress in the last 30+ years, but work remains to realize a future where every patient has access to expert care. This gap in care is particularly present for many in our international community, which is why we’re unveiling a new “International Treatment Center” program aimed at increasing the number of knowledgeable physicians and care teams around the globe…
Read MoreDonegal News: Letterkenny man shares story to mark Rare Disease Day
Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”
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