What the HHT?
A blog for the HHT community
Front Page Announcements
1st CHRN Conference Convening
The 1st Cure HHT Research Network International Convening is just around the corner and taking place in Boston from March 18-20! Our HHT patient advocates, leading physicians and scientists from around the globe have our community’s survey data in hand. Following virtual workshop sessions, this amazing group will be working side-by-side to develop a research roadmap that prioritizes HHT…
Read MoreHelp KISS HHT goodbye!
February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their…
Read MoreRare 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.
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