What the HHT?
A blog for the HHT community
Front Page Announcements
Lynne Sekarski, RN receives the Heroes in Action Award from the March of Dimes
In recognition of her tireless work with pediatric HHT patients at the Washington University School of Medicine HHT Center of Excellence, the March of Dimes organization presented Ms. Sekarski, HHT pediatric nurse and long-time CoE Coordinator, with this incredible honor for her years of dedicated service caring for children with HHT. She was nominated by the many grateful families she has worked with, along with colleagues and supervisors. We are so incredibly proud of the work Ms. Sekarski does for our HHT community. Congratulations!
Read More14th HHT International Scientific Conference
On behalf of the Organizing Committee, we would like to invite you to join us in Estoril, Cascais, Portugal for the 14th HHT International Scientific Conference. We will host a Welcome Reception on September 28th and scientific sessions on September 29-October 2nd, 2022. The program this year will feature several outstanding keynote speakers, multiple cross-disciplinary sessions, extensive…
Read MoreBecome a Tissue Donor
Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating tissue. You do not need to have a brain AVM to participate in this study project.
Read MoreNo-Cost Genetic Testing for HHT & Other Rare Diseases
The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected singe gene disorders who do not have a genetic diagnosis. The goal of their project is two-fold: (1) provide access to testing for families that are genetically undiagnosed and (2) discover previously un-identified…
Read MoreFB Live Event: Back to School (Recorded)
Now available in our Resource Library – Facebook Live event (recorded) featuring Cure HHT Chief Medical Officer, Scott Olitsky, MD, and school nurse, Leslie A. Perry, RN, MS. As children gear up and get ready to head back to school, the duo covers a range of topics from how to discuss HHT with your school…
Read More