What the HHT?
A blog for the HHT community
News
Stanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook
March 9, 2020 | Stanford Medicine |by Tracie White – “Jennifer Cook has dealt with migraine headaches and nosebleeds since she was in junior high school, but it wasn’t until much later in life, after two small strokes in her 40s, that she discovered these seemingly disconnected ailments — including strange, little red dots on…
Read MoreHHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)
February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that watching family members having serious unexplained nose bleeds has been part of his life for as long as he can remember. “My earliest memories are of my grandmother constantly clutching a handkerchief that was blood-stained. My…
Read MoreHHT in the News: “I have the same rare disease that killed my brother”
February 24 2020 | Independent.ie “As Rare Disease Day falls this Saturday, Katie Woods tells her story of living with HHT – a genetic blood vessel disorder…”
Read MoreGlobal Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”
HHT is Rare As One!
Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, which will provide funding, tools, expansion support, and training to create a larger, more integrated HHT community! Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan…
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