What the HHT?
A blog for the HHT community
Front Page Announcements
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 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…
Read MoreHHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT Center of Excellence. Her life changed in an instant when she was rushed to the emergency room. The last thing she said to her mother before her life completely changed was, “Mommy I love you. My…
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