At the age of 40, Will Valentine was diagnosed with HHT. Genetic testing also revealed that his son inherited the disease. “I decided the best thing I could do for my son was to lead by example,” said Will. As the oldest of four, he shared his genetic results with his brothers and sister, encouraging them and their children to also get tested.
Read Will's story, and learn more about how you can help plant the seeds of awareness in your community this June!
How You Can Increase Awareness of HHT
Talk to your Healthcare Providers about HHT
HHT symptoms are often mistaken for other conditions - knowing the common misdiagnoses can lead to faster identification and significant improvements in quality of life. Download this comprehensive fact sheet to share with your physician, who may not be familiar with HHT, to provide a roadmap for a better understanding of this disease.
Cure HHT hosts several educational events and community building opportunities each year!
Some of these events include regional educational conferences for both patients and physicians, and family walks. Additionally, we offer free educational materials in our extensive Resource Library.
Share Your Story
Sharing your HHT story strengthens and empowers our community.
It can make all the difference to know you’re not alone when living with a rare disease like HHT.