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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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Rainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle

April 17, 2019

Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This…

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Washington Post Feature: Zina Martinez Story

November 20, 2018

The Washington Post | November 17, 2018 Check out the Washington Post Health & Science section’s featured article about…

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Chair’s Corner: UNC Department of Medicine Podcast with Dr. Raj Kasthuri about HHT

June 29, 2018

Podcast Series | The Department of Medicine at the University of North Carolina Check out the transcript of a…

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Living with HHT: Review in Journal of Radiology Nursing

June 21, 2018

Book Review | Journal of Radiology Nursing June 2018: Volume 37, Issue 2, Page 137. Read the article from…

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Marianne Clancy Interview on Fox 45 News Baltimore

June 21, 2018

Fox 45 News Baltimore | June 18, 2018 Check out the news clip from the interview between Fox 45…

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Why Was This Teenager Bleeding So Excessively?

March 13, 2018

The New York Times Magazine | 2018

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Charlie Druken was ‘living the dream’ at NHL oldtimers game

December 18, 2017

The Telegram | 2017

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Tulane receives $1.7 million grant from Department of Defense for blood vessel research

November 14, 2017

Tulane News | 2017

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