What the HHT?
A blog for the HHT community
Posts by Riley Blevins
HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing day of learning and fun! Did we mention it’s FREE! It’s a great way to meet HHT families in your area, share experiences, and learn more about HHT from the experts at UCSF. Space is limited. Learn more and register today!
Read MoreChildren’s Hospital of Philadelphia receives funding for pediatric HHT patients
I had the opportunity to visit our pediatric team at the Children’s Hospital of Philadelphia (CHOP) while in town for a conference. The team was awarded an internal grant of $200,000, and we wanted to highlight the work they propose to do with this project.
Dr. Lauren Beslow (Neurology) kindly volunteered to give me a tour of CHOP. This children’s hospital is one of the most beautiful I’ve seen and is completely designed with kids in mind. Carefully chosen artwork that is cheerfully representative of children with all kinds of abilities, lit-up sculptures of brains, sensory mats on the floor, tabletops with pieces that spin, bookshelves with free books to take home, and colors everywhere truly make CHOP seem like a giant play area where you happen to see a healthcare provider.
Read MoreUMH Certified as HHT Center of Excellence
UHealth – University of Miami Health System has been officially certified as an HHT Center of Excellence. This marks another significant step forward in our fight to increase access to specialized care for our community! By earning this designation, UHealth, part of the University of Miami Miller School of Medicine, joins our growing network of more than 30 Centers of Excellence across North America.
Miami is currently accepting new patients and welcomes inquiries from patients across South Florida, the Caribbean and Latin America. The team includes many Spanish-speaking experts!
Read MoreUAB named HHT Center of Excellence
Cure HHT is excited to announce that The University of Alabama at Birmingham (UAB) is now certified as an HHT Center of Excellence — providing expert, comprehensive care for HHT patients. UAB is currently accepting new patients, and welcomes your inquiries!
Under the guidance of co-Directors Drs. Jesse Jones and Theresa Caridi, the specialties that support care through the UAB COE include ENT, cardiology, gastrointestinal/ hepatology, genetics, interventional radiology, neuroradiology, neurosurgery, and pulmonology.
Read MoreHHT Global Awareness Day
June 23rd is HHT Global Awareness Day! While we work to raise awareness all year long, HHT Awareness Month is a time where we ask our community to get especially loud!
Cure HHT is the only patient advocacy organization in the world funding research, awareness and education for HHT patients, their families and the medical/scientific community. Rally your family and friends to join our fight to raise awareness and save lives!
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