What the HHT?
A blog for the HHT community
Posts by Talia Lewis
Donald’s Story: What We Know Can Save a Life
For most of Donald’s life, nosebleeds seemed ordinary. His mother had them. His siblings had them. No one knew they were signs of HHT—until a routine chest X-ray revealed a lung AVM, and later, his younger sister died from a brain AVM at just 26. Donald’s story is one of grief, gratitude, screening, and the life-saving power of awareness.
Read MoreCure HHT Canada Launches as Part of a Growing International Commitment to HHT Care, Research, and Advocacy
Newly strengthened organization will work alongside Cure HHT to improve diagnosis, care, and connection for the Canadian HHT community Cure HHT is proud to announce the launch of Cure HHT Canada, a dedicated organization serving individuals and families affected by hereditary hemorrhagic telangiectasia (HHT) across Canada. HHT is a genetic blood vessel disorder that can…
Read MoreDr. Conrad’s Story: A Physician’s View
For Dr. Miles Conrad, HHT care is built on more than procedures and treatment plans. It is built on trust, careful listening, and the small moments of expert guidance that can change a patient’s path. In this final Visible Together story, Dr. Conrad reflects on what patients with HHT have taught him, why expert care matters, and why this moment of innovation deserves urgent support.
Read MoreAlder Hey Children’s Hospital Achieves Cure HHT Center of Excellence Designation
Newly recognized international treatment center expands access to expert, coordinated care for people living with HHT MONKTON, MD—Cure HHT is proud to announce that Alder Hey Children’s Hospital in Liverpool, United Kingdom, has been officially recognized as an HHT Center of Excellence, expanding access to expert, coordinated care for people living with hereditary hemorrhagic telangiectasia…
Read MoreDavid’s Story: The Family HHT Leaves Behind
David does not have HHT, but HHT has shaped his family for generations. Through loss, caregiving, and his sister Carol’s experience with expert care, David’s story shows why visibility matters — not only for patients, but for every family still searching for answers.
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