Latest News

Announcements, Blog Posts, News Articles

AnemoCheck Mobile – the world’s first non-invasive, equipment-free smartphone app for noninvasive and instant hemoglobin level estimation is now available for Android and iOS. The app allows users to check…

Cure HHT Participates in PHA’s Associated Conditions Summit

January 4, 2022

Individuals with HHT have a greater risk of developing pulmonary hypertension. Statistically, 15-20% of HHT patients have PH. In November 2021, Cure HHT participated in the The Pulmonary Hypertension Association…

Shop for a cause. Shop for a cure. Shop Cure HHT!

October 20, 2021

Shopping for a cure has never been easier! Our new Cure HHT store, hosted by Shopify, provides so many great options for spreading awareness or gift giving – just in…

CDC Features HHT in Popular Webinar Series

August 6, 2021

One of the biggest challenges facing HHT patients continues to be the lack of HHT knowledge amongst healthcare providers not affiliated with an HHT Center of Excellence. We understand how…

Barrow Neurological Institute named new HHT Center of Excellence

June 30, 2021

Cure HHT recognizes centers equipped with the personnel, expertise, commitment, and resources to provide comprehensive evaluation, treatment, and education to individuals with HHT and their families. After 18 months of…

Cure HHT Spring 2021 Newsletter: Now Available!

June 28, 2021

Scan the pages of our printed Spring newsletter, which hit mailboxes in early June, as a pdf or Flipbook.

Blog: What the HHT?

Uplifting Athletes Support the Rare Disease Community

By Ashley Watkins | February 6, 2024

An HHT patient conference can change your life

By Ashley Watkins | January 16, 2024

Ann Trussell: “My promise to my daughters…I will do everything in my power to find a cure!”

By Ashley Watkins | December 27, 2023

Gabby Choi: There is so much power in patients advocating for themselves…

By Ashley Watkins | December 21, 2023

They told John he only had a month left to live…he knew he had to keep fighting

By Ashley Watkins | December 12, 2023

HHT rocked our world

By Ashley Watkins | November 29, 2023

HHT in the News

A Monumental $128 Million Step Forward for HHT Research

April 3, 2024

Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss!

In short, Diagonal’s lead program is focused on developing an innovative treatment not just to alleviate the symptoms of HHT – but using antibodies to reverse the formation of vascular malformations altogether. That’s right, there is now a biotechnology company, backed by $128 million in Series A financing, focused entirely on a curative HHT therapy.

For months, Cure HHT has been collaborating with Diagonal’s management team to help make this day a reality. We have connected them to leading HHT scientists to help them further develop their program, and have spent countless hours meeting with venture capital firms to educate them on the burden of this disease and help Diagonal secure funding to launch.

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.”