Skip to content

What the HHT?

A blog for the HHT community

KISS HHT goodbye this February!

By Ashley Watkins | February 14, 2023 |

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 More

Online Education: Research Roundtable (RECORDED)

By Ashley Watkins | January 12, 2023 |

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 More

Patient & Physician Conferences Announced!

By Ashley Watkins | January 1, 2023 |

Join members of our HHT community – patients and physicians alike – as we come together for our both regional and national conferences to meet members of our local and extended HHT community, as well as learn more about HHT and share new scientific advancements. This year, medical professionals can now receive CME credits for participation!

Open registration dates will be released soon.

Read More
Scroll To Top