What the HHT?
A blog for the HHT community
Front Page Announcements
Donegal News: Letterkenny man shares story to mark Rare Disease Day
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.”
Read MorePATH Clinical Trial – Now Recruiting!
The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at several research centers across the United States. Find centers and check your eligibility…
Read MoreKISS HHT goodbye this February!
February is Rare Disease Month and once again, you can honor someone special to you who is affected by HHT, by participating in our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®)!
For each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their battle to the disease, by collecting hearts and KISSES…
Read MoreOnline Education: Research Roundtable (RECORDED)
Delve into the exciting clinical research projects underway in HHT! Cassi Friday, PhD (Overview) will provide an overview of what goes into a clinical trial. Dr. Marie Faughnan (Brain AVM Study), Dr. Keith McCrae (PATH Study), Dr. James Gossage (Pazopanib Trial), and Brian Mangilog (Rare Genomes Project) will share more research projects and the potential impacts for patients. Advancements in research are not possible without the participation of patients. These various studies range from drug therapy trials to tissue donations and genetic testing. Recording now available.
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.
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