What the HHT?

A blog for the HHT community

Front Page Announcements

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…

Read More

AnemoCheck Mobile App

AnemoCheck Mobile – the world’s first non-invasive, equipment-free smartphone app for noninvasive and instant hemoglobin level estimation is now available for Android and iOS. The app allows users to check their hemoglobin levels using the camera of their phone to take pictures of their fingernail beds. Cure HHT partnered with the makers of the app,…

Read More

NARRATE Study: Rare Disease Survey

The Children’s Hospital of Philadelphia is conducting a research study aimed at identifying needs among communities affected by rare disease with hopes of bridging existing communication gaps between rare disease patients, families, and physicians. Adult parents and patients living with rare diseases are invited to participate in an online survey.

Read More

Cure HHT Participates in PHA’s Associated Conditions Summit

Individuals with HHT have a greater risk of developing pulmonary hypertension. Statistically, 15-20% of HHT patients have PH. In November 2021, Cure HHT participated in the The Pulmonary Hypertension Association (PHA) Associated Conditions Partner Summit to explore ways to improve the understanding of PH and reduce barriers to diagnosis among at-risk groups, including those with…

Read More