What the HHT?
A blog for the HHT community
Cure HHT 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 MoreUF Health named HHT Center of Excellence
Cure HHT is excited to announce that UF Health has been named the first HHT Center of Excellence in Florida and the 31st CoE in North America. Cure HHT recognizes hospitals equipped with the personnel, expertise, commitment and resources to provide comprehensive evaluation, treatment and education to individuals with HHT and their families. Recognition as an…
Read MoreJune Awareness Month
HHT Awareness Month is here, and we are expanding our reach on a world-wide level as we launch our #LetTheWorldHearUs campaign.
The world is all around…waiting to hear your voice. Sharing your HHT experiences—the good and the bad—can make all the difference. By joining us this Awareness month, together we can reach the ears of the health care industry, legislative decision-makers, and the global population to bring awareness forth about a disease that impacts 1 in 5000 people worldwide. With 90% of HHT patients still undiagnosed, HHT has gone unheard for far too long. We need to change that once and for all!
Read MoreHHT Global Awareness Day
HHT Global Awareness Day (June 23rd) Get loud and #LetTheWorldHearUs In recognition of awareness day, we’re giving a 10% discount on all items purchased from our store on June 23rd! Why 10%, you ask? It’s estimated that only 10% of HHT patients around the world are diagnosed today. While HHT can be a brutal and…
Read MoreE-News: Insider Connection
Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more! Sign up today!
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