What the HHT?
A blog for the HHT community
Posts by Riley Blevins
Canada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”
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…
Read More