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Uncovering Your Roots: Decoding Genetic Testing

Discover the power of genetic testing as we uncover the roots of HHT! Join us for an enlightening online education opportunity with Theodore Drivas, MD, PhD, University of Pennsylvania HHT Center of Excellence, and Genetic Counselor, Zahra Girnary, University of North Carolina HHT Center of Excellence, who will guide you through the process of genetic screening, as…

Iron and HHT: Boosting Your Health & Energy with Iron-Rich Foods

Calling all foodies! Grab your apron and head to the kitchen to join Registered Dietitian Nutritionist Kat Benson for our most sizzling online education opportunity yet, as she leads you through an interactive cooking demonstration! Kat discusses the importance of iron in the body, the correlation between iron deficiency and HHT, the best dietary sources of iron, and…

Research Roundtable: An Inside Look at Exciting Clinical Trials

Delve into the exciting clinical research projects underway in HHT! Cassi Friday, PhD will provide an overview of what goes into a clinical trial. Dr. Marie Faughnan (Brain AVM Study), Dr. Keith McCrae (PATH Study), Dr. James Gossage (Pazopanib Trial), and Brian Mangilog (Rare Genomes Project) will share more research projects and the potential impacts…

PH and HHT: Signs, Symptoms and Disease Management (Recorded)

PHA and Cure HHT – Murali M. Chakinala, M.D. discusses the importance of recognizing the signs and symptoms of Pulmonary Hypertension (PH) and Hereditary Hemorrhagic Telangiectasia (HHT), and the importance of early diagnosis as well as disease management. Approximately 15-20% of people with HHT either have or are developing Pulmonary Hypertension (PH). A few common…

Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)

In March 2020, Cure HHT was 1 of 30 organizations selected to participate in the Chan Zuckerberg Initiative (also known as CZI) Rare is One Project. This ambitious project is lifting up the work that patient communities are doing to accelerate research and drive progress against rare diseases. The CZI Rare as One project is…

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