What the HHT?

A blog for the HHT community

Cure HHT Announcements

Cure HHT Virtual Town Hall: “Meet the Board” (recorded)

Cure HHT Board of Directors Town Hall (Recording available through June 30, 2020) In honor of HHT Awareness month, we’d like you to meet six of our sixteen Board Members, including our Board President Sara Palmer, PhD, at Cure HHT’s 1st Town Hall Meeting on June 23rd — HHT Global Awareness Day! Our volunteer Board…

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Cure HHT Official Health Updates: Coronavirus Disease (COVID-19)

CURE HHT OFFICIAL STATEMENT COVID-19 Traducción Española Update:  June 11, 2020 | NORD ASSISTANCE PROGRAM & CENTERS OF EXCELLENCE (OPERATING STATUS) NORD ASSISTANCE PROGRAM For patients who have been directly impacted by the COVID-19 pandemic, the National Organization for Rare Disorders (NORD) is offering an Assistance Program designed to provide assistance to rare disease patients.…

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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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