What the HHT?
A blog for the HHT community
Posts by Ashley Watkins
Rare as One: Cure HHT receives CZI grant extension
We are thrilled to announce that our grant in the Chan Zuckerberg Initiative – Rare As One will be extended for another year! It’s hard to believe it has been 2 years since we were first selected as one of only thirty rare disease organizations to be a part of CZI – Rare as One.…
Read MoreAnemoCheck 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 MoreNARRATE 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 MoreNYMAC Genetic Counseling Survey
The University of Arkansas for Medical Sciences is offering an opportunity to participate in a research study aimed at assessing a gap in genetic counseling literature involving the Hispanic/Latinx population. **Eligible participants can be anyone who lives in the USA or its territories, aged 18-79, whose primary language is Spanish** Click here to be redirected…
Read MoreCure 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…
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