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Cure HHT Announcements

Final Days to Register! Denver Regional Conference

March 20, 2023

HHT Patient & Physician Conference
Denver, Colorado | March 25, 2023

Don’t miss your chance to connect with the local HHT community just outside Denver, Colorado in Aurora, on March 25, 2023, for a day of networking and learning for both patients and physicians. Medical professionals can now receive CME credits for participation. This is an in-person conference. Registration is now open.

Singapore General Hospital Certified as HHT International Treatment Center

March 8, 2023

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…

PATH Clinical Trial – Now Recruiting!

February 28, 2023

The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at several research centers across the United States. Find centers and check your eligibility…

KISS HHT goodbye this February!

February 14, 2023

February is Rare Disease Month and once again, you can honor someone special to you who is affected by HHT, by participating in our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day^®)!

For each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by collecting hearts and KISSES…

Thank You for an Amazing Year

December 30, 2022

We want to extend a heartfelt thank you as we celebrate an amazing year of community and progress in 2022. Watch a year in review here.

If you’d like to learn more about the cutting edge developments happening in HHT science and research, click here.

NEW! Text to Give

December 21, 2022

You can now support Cure HHT this holiday season via text! As an added bonus, when you make a donation through your mobile device, you can choose to receive future HHT news and updates directly to your phone. Message & data rates may apply. Donate today to have your gift DOUBLED by a generous group of donors. To give, text “donate” to (410) 237-0199.

Blog: What the HHT?

HHT rocked our world

By Ashley Watkins | November 29, 2023

Access to expert care at CHOP saved Jahier’s life

By Ashley Watkins | November 16, 2023

Creating hope on Giving Tuesday for our littlest of patients

By Ashley Watkins | November 16, 2023

A major milestone for HHT treatment!

By Ashley Watkins | September 26, 2023

Pazopanib Clinical Trial: Q&A

By Ashley Watkins | September 26, 2023

Children’s Hospital of Philadelphia receives funding for pediatric HHT patients

By Ashley Watkins | August 22, 2023

HHT in the News

BBC News: Jersey woman calls for more awareness of rare condition

April 13, 2023

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.

Donegal News: Letterkenny man shares story to mark Rare Disease Day

March 5, 2023

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.”