What the HHT?
A blog for the HHT community
Posts by Riley Blevins
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 MorePress 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 MoreHHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing day of learning and fun! Did we mention it’s FREE! It’s a great way to meet HHT families in your area, share experiences, and learn more about HHT from the experts at UCSF. Space is limited. Learn more and register today!
Read MoreHHT Global Awareness Day
Global HHT Awareness Day is just a few days away. Did you know, this date wasn’t chosen at random? It honors the life of Grace Nolan, who sadly passed away at the young age of 9 from complications of HHT. Since then, her family has championed for HHT awareness and research. This year marks the 25th anniversary of Grace’s tragic passing. The Grace Nolan Foundation has generously agreed to match the first $25,000 we raise on June 23rd! Your gift will be DOUBLED!
Visit our HHT Changemakers page today to hear Grace’s story, learn how you can get involved this June and to donate. Learn more >>
Read MoreJune Awareness – Be an HHT Changemaker!
June marks one of the most important months in the calendar year for those who suffer from HHT, as it’s National HHT Awareness Month. This year we are focusing on “HHT Changemakers” – celebrating the incredible strength, resilience, and commitment of our mighty community in our fight against HHT.
You don’t have to be a researcher or physician or scientists to be a Changemakers – Changemakers are individuals just like all of you! Patients, caregivers, supporters and friends who tirelessly advocate for greater awareness, better treatment, and – one day – a cure. Your passion and dedication inspire us every day, and together, we can achieve remarkable things. When we come together as a community to fight for the change we want to see, we are all changemakers. Learn the many ways you can become an HHT Changemaker today! Learn more >>
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