Over the years and thanks to the support of our community, we’ve been able to grow the number of clinicians and researchers focusing on advancing our understanding and treatment of HHT.
We’re excited to announce another major step forward in that fight! Dr. Edda Spiekerkoetter and her scientific colleagues at the Stanford HHT Center of Excellence were recently awarded a $2.8 million (yes, you read that right!) NIH/ NHLBI grant focused on the understanding and targeting of molecular and cellular events responsible for the development, growth, and regression of pulmonary AVMs.Read More
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 More
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare…Read More
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found…Read More
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…Read More