What the HHT?

A blog for the HHT community

Posts by Nicole Schaefer

Recorded WEBINAR: IVF and Pre-Implantation Genetic Testing for HHT

On July 16th, Katie Wusik Healy, LGC, MS, Genetic Counselor at the Cincinnati HHT Center of Excellence, talked about pre-implantation genetic testing (PGT), including what you might consider before pursuing PGT. In addition, options for determining if a child has HHT through genetic testing before and during pregnancy, as well as after birth were discussed.…

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Stanford’s Avastin Study is Complete!

Cure HHT is excited to announce that “A Randomized Controlled Trial of Bevacizumab for HHT-Related Epistaxis” (aka “Avastin Trial”) conducted at Stanford University recruited its last patient on February 5, 2019! THANK YOU to the 40 HHT patients who participated in the Avastin trial, many of whom traveled across the country to Palo Alto, California,…

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Comprehensive HHT Resource: Living with HHT Book

By Sara Palmer, PhD In this recently published book, psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health conditions, draws on current research as she thoroughly describes the symptoms of HHT, explains how the diagnosis is made (and often missed), and details treatment options. While addressing the medical aspects of…

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Cure HHT Helps Raise Awareness for Pulmonary Hypertension

Did you know that people living with HHT are at risk of developing Pulmonary Hypertension (PH)?  Cure HHT has partnered with the Pulmonary Hypertension Association (PHA) to raise awareness about the connection of these two diseases. To learn more about how HHT and PH are connected, check out our HHT and PH resources in the Cure…

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The First Comprehensive Book on “Living with HHT”

Living With HHT Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia Paperback, 200 pages   Sara Palmer, PhD and Johns Hopkins University Press announce the first comprehensive book on HHT, released in December 2017. Sara addresses how HHT patients can maintain their own emotional health, help other family members including children, partners and parents, and live life as fully as…

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