What the HHT?
A blog for the HHT community
Blog
One in a Million
One year ago today, I underwent a liver transplant due to a genetic condition called HHT (Hereditary Hemorrhagic Telangiectasia), or Osler-Weber Rendu Syndrome. Roughly 1 in 5,000 people are diagnosed with HHT. Of that 1 in 5,000, up to 75%, have liver involvement. Of that 75%, only 8% become symptomatic. The data gets spotty after this, and from my research, I can only find 59 documented cases since 1985 of liver transplantation related to HHT.
Read MoreCure HHT Welcomes Cassi Friday, PhD
Cure HHT is thrilled to welcome Cassi Friday, PhD as the newest member of our team! Get to know Cassi, her connection to HHT, and learn more about her role as Director of Cure HHT Research Programs & Grants.
Read MoreHelp Keep Us On the Cutting Edge
The turn of the calendar to December marks the kickoff of our year-end appeal, and this year we are asking for your continued support to help keep us #OnTheCuttingEdge. The milestones we have our sights set on next are the kinds of things we could have only dreamed about just a few short years ago. A future exists where therapies – not surgeries – treat the chronic aspects of this disease. And that future is closer than you might realize!
Cure HHT remains a driving force for medical and scientific advancements in HHT, and throughout the month, we will be highlighting the transformational work being done…
Read MoreNew Therapeutic Development Arm Takes Shape
A Message From Marianne Clancy, Cure HHT Executive Director:
As you have read in the fall edition of our newsletter, our foundation has invested in the creation of a new “Therapeutic Development Arm” to help us more directly collaborate with the medical and scientific community to fast-track life-changing breakthroughs in HHT.
I am writing to you now to share the tremendously exciting news that Dr. Murali Chakinala will be joining Cure HHT in the role of Senior Clinical Research Advisor. In this role, Dr. Chakinala will be responsible for leading our strategy for engaging with industry to grow the clinical research and scientific opportunities for Cure HHT. He will also play a pivotal role in collaborating with our CHRN roadmap teams to prioritize and help operationalize the most impactful projects.
Read MoreOwning Our Future: Introducing Our New Therapeutic Development Arm
Our mission has remained the same since our founding: to find a cure… to create a future without the unnecessary suffering, without the pain and loss. While work remains to make that future a reality, we’re excited to introduce a monumental step we’re taking to bring that future forward faster.
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