What the HHT?

A blog for the HHT community

Posts by Nolie Krock

FREE Genetic Testing for Rare Diseases

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic diagnosis. The goal of their project is two-fold: (1) provide access to testing for families that are genetically undiagnosed and (2) discover previously un-identified gene…

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Cure HHT Research Network: Clinician and Scientist Surveys

The Cure HHT Research Network has put together surveys for our medical and basic science communities that will help us to identify research priorities in HHT. Launched in early 2020, the Cure HHT Research Network (CHRN) aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening and…

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Rainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle

Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This incredible article by recreational therapist Lindsay Vos in Rainbow Rehab’s Rainbow Visions magazine is an intimate and honest portrayal of coming to terms with HHT. “Coming Full Circle” follows Lindsay’s journey through denial, HHT diagnosis, removal…

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