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Ask The Doctor: Nosebleed Management 101 (Recorded)

July 7, 2020

ASK THE DOCTOR: NOSEBLEED MANAGEMENT 101 Watch our “Ask the Doctor” series with Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and HHT patient, Chelsea McBride as they discuss…

HHT Awareness in a BIG Way!

July 6, 2020

This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route…

Ask the Doctor – HHT and PH (recorded)

June 10, 2020

Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, discuss the dual diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT)…

SURVEY: COVID-19 and Rare Disease Research

June 1, 2020

Cure HHT has partnered with Genetic Alliance and we need your help! Your voice is urgently needed in the fight to end COVID-19 through a 5-minute survey. You can fight this virus with…

Managing Stress and Emotional Hurdles in HHT (recorded)

May 21, 2020

Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine, discusses how to manage stress…

Virtual Meet-Up: New Cure HHT Resource Library (recorded)

May 20, 2020

On May 20, 2020, Nicole Schaefer, Director of Medical and Scientific Programs and Phyllis Loveland, Operations and Communications Manager took a look into all that the new Cure HHT Resource…

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.”