Latest News

Announcements, Blog Posts, News Articles

Help Keep Us On the Cutting Edge

December 7, 2022

The turn of the calendar to December marks the kickoff of our year-end appeal, and this year we are asking for your continued support to help keep us #OnTheCuttingEdge. The milestones we have our sights set on next are the kinds of things we could have only dreamed about just a few short years ago. A future exists where therapies – not surgeries – treat the chronic aspects of this disease. And that future is closer than you might realize!

Cure HHT remains a driving force for medical and scientific advancements in HHT, and throughout the month, we will be highlighting the transformational work being done by three of our brilliant scientists and clinicians. These are examples of what your donations can accomplish! In addition to raising awareness and increasing access to care, we directly support projects like the ones you’ll hear about through seed grants, advocacy support and more.

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Study: Validating a New Nosebleed Management Tool

December 2, 2022

Cure HHT, in partnership with doctors at Johns Hopkins’ Hospital HHT Center of Excellence, invites you to participate in a study aimed at validating a nosebleed eDiary tool that represents a critical element in our ability to gain FDA approval for future drugs and treatments.

Currently, a standardized tool does not exist that helps accurately capture and scale HHT patients’ data around quality of life and impact of their nosebleeds (duration, frequency, severity, etc.). By participating in the validation of this tool, you have the chance to help us develop a measurement system to help prove the benefit of future drugs and treatments during trials.

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2022 Newsletters now available online!

October 7, 2022

Scan the pages of our printed 2022 newsletters (spring, summer and fall) as a pdf or Flipbook. Catch up on recent scientific news, progress, leadership changes and more.

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14th HHT International Scientific Conference

September 14, 2022

On behalf of the Organizing Committee, we would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception…

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Become a Tissue Donor

August 25, 2022

Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating  tissue. You do not need to have a brain AVM to participate in this study project.

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TDC Leaps for a Cure

August 23, 2022

TDC Leaps for a Cure – 2nd annual walk to cure HHT. The TDC dance community is coming together again on September 17, 2022 to support and fundraise for HHT research, a cause very personal to beloved studio owner, Maria Mahoney and her family. All students, families, friends and alumni are invited to participate in this important cause. Sign up, fundraise, and join TDC in spreading the word about HHT! 

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Pournaras - Peterbourough Examiner

Canada Girl’s Rare Disease Inspires Her to Co-Author Book

June 1, 2020

May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh:   “Most kids in the hospital spend their time…

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

March 11, 2020

March 9, 2020 | Stanford Medicine |by Tracie White  – “Jennifer Cook has dealt with migraine headaches and nosebleeds…

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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…

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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…

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

February 13, 2020

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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…

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Cleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”

December 9, 2019

Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of…

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Scruggs-Kenosha News

HHT in the News – Wisconsin

November 18, 2019

KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but…

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