Skip to content

What the HHT?

A blog for the HHT community

Cure HHT to Host 15th HHT International Scientific Conference

One of the most meaningful ways Cure HHT works to advance research and science is through our HHT International Scientific Conference. Every two years, the world’s brightest minds in HHT medicine and science convene at our meeting to discuss the latest research. These events fuel collaboration between physicians and scientists, helping to fast track the…

Read More

Press Release: Cure HHT Plays Key Role in First Successful HHT Trial

For more than 30 years, Cure HHT has helped to expand the research and medical community focusing on HHT.

 

We’re thrilled to share some important news from the world of HHT research.

The National Institutes of Health-sponsored PATH trial is complete, the results are in, and it marks an important step forward for HHT treatment and care. This trial was the first positive, large-scale randomized trial for an HHT therapeutic. This study tested the use of the cancer drug pomalidomide in treatment of HHT-related bleeding — and researchers saw very promising results. The data was strong enough that the trial ended early!

But the news gets even better: Now, the full results of the study are published in the New England Journal of Medicine (you can read it here— one of the most prestigious medical publications in the world, read by more than one million physicians every week. This is a huge win for HHT Awareness, as this publication puts HHT in the spotlight of the medical community.

At Cure HHT, we are the catalyst for driving HHT science forward. We’re proud to have played an important role in advocating for the funding necessary to run this study, and in recruitment to ensure its success.

Read our full press release here and learn more about this milestone below.

Read More

HHT Continuing Education Program for medical professionals

We are excited to announce the launch of the HHT Continuing Education Hub, an online platform through which providers of all specialties can take courses on various HHT topics!

Many medical providers are required to earn a certain amount of credits per year. Now, providers seeking to further their HHT knowledge can receive continuing education credits (CE or CME) when they complete our courses.

Read More

Cure HHT Takes on Capitol Hill

This month, our group of Cure HHT staff, patient advocates, physicians and researchers descended upon Capitol Hill with the mission of shedding light on the importance of protecting and expanding federal funding for HHT. In all, we had 35 appointments with congressional and senatorial office members and staff – including a meeting with Senator Susan Collins. Our advocacy efforts wrapped up with a Congressional Briefing from inside the Capitol Building, where we presented on the impact federal funding can have in changing the trajectory of this disease.

Read More
Scroll To Top