What the HHT?
A blog for the HHT community
Cure HHT Announcements
HHT Awareness in a BIG Way!
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard! Our “More Than Just a Nosebleed” billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day. Can you imagine…
Read MoreAsk the Doctor – HHT and PH (recorded)
Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, discuss the dual diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) and Pulmonary Hypertension (PH). This dynamic duo take you through identifying the signs of PH, its relationship to HHT, diagnosis and treatment, and the resources…
Read MoreSURVEY: COVID-19 and Rare Disease Research
Cure HHT has partnered with Genetic Alliance and we need your help! Your voice is urgently needed in the fight to end COVID-19 through a 5-minute survey. You can fight this virus with information and without leaving home! Whether you are currently feeling healthy or in need of medical attention, understanding YOUR specific circumstances can help scientists study…
Read MoreManaging Stress and Emotional Hurdles in HHT (recorded)
Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine, discusses how to manage stress and emotional hurdles in HHT. Living with HHT often means coping with a host of unpredictable symptoms, including nosebleeds, anemia, fatigue, shortness of breath, headaches,…
Read MoreVirtual Meet-Up: New Cure HHT Resource Library (recorded)
On May 20, 2020, Nicole Schaefer, Director of Medical and Scientific Programs and Phyllis Loveland, Operations and Communications Manager took a look into all that the new Cure HHT Resource Library has to offer the HHT Community, both patients and health care providers. The Resource Library is bursting with hundreds of published scientific literature, fact…
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