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What the HHT?

A blog for the HHT community

Ask the Doctor – HHT and PH (recorded)

Ask the Doctor

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…

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SURVEY: 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…

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Managing 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,…

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Virtual 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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