HHT in the News

Cure HHT Official Health Updates: Coronavirus Disease (COVID-19)

March 26, 2020

CURE HHT OFFICIAL STATEMENT COVID-19 Traducción Española Update:  March 26, 2020 With many new and existing patients in the HHT Community inquiring about well visits, screenings, scheduled procedures, etc. at HHT Centers of Excellence (COEs) amid COVID-19, we have been in discussion with all twenty-eight HHT COEs to disseminate visit protocols associated with their institutions. …

Announcement from Cure HHT Executive Director (COVID-19)

March 19, 2020

A Message from Cure HHT Executive Director, Marianne Clancy To our HHT Community: Two years ago, we coined the phrase #InThisTogether as part of our annual year-end appeal.  Now more than ever, this simple phrase has been on our minds and is driving all that we do during these unprecedented times surrounding the outbreak of the…

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PATH – Now Recruiting!

March 16, 2020

The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at 11 research centers across the United States. Find centers and check your eligibility. **Please note that recruitment may be impacted by health concerns over COVID-19. Please check with your local recruitment centers**

Stanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook

March 11, 2020

Stanford Medicine |  29 Mar 2020   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…

MacGinty, Michael - Irish Times

HHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)

February 28, 2020

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…

Independent-IE-Ireland

HHT in the News: “I have the same rare disease that killed my brother”

February 25, 2020

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…”

Global Genes – Cure HHT’s Marianne Clancy Named “Rare Leader”

February 13, 2020

HHT is Rare As One!

February 4, 2020

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…

2019 SciCon – Angiogenesis Publications

January 8, 2020

The executive summary and abstracts from the 2019 HHT International Scientific Conference, including details of the clinical and basic science, are now available online in Angiogenesis. As a valuable part of our mission to find a cure, we hope you find these research articles both informative and inspiring.