What the HHT?

A blog for the HHT community

Posts by Ashley Watkins

Rare Disease Month

The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger…

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Talk Circle: Living With HHT Virtual Book Club Event

Talk Circle: Living With HHT Virtual Book Club Event Wed., February 24th | 7:00 p.m. (EST) (Final Night of the Winter Series) It’s the three year anniversary of the publication of Living with HHT – Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia and we are celebrating with a modern twist on a traditional book club! Join…

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A WIN on Capitol Hill for HHT!

You may recall that back in November 2020, Cure HHT reached out for help to urge the Senate to correct an oversight related to the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP) and add “vascular malformations” back among the conditions eligible for study – a designation that has advanced HHT research since 2015. Our…

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Beta Testers Needed for AnemoCheck Mobile App

Cure HHT and Sanguina have been working together to beta test a new smart phone app that will allow users to check their hemoglobin anytime with their smartphone. We previously invited you to complete a survey to determine your eligibility to participate in the beta testing for the app. Phase 1 of the beta testing…

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NEW Research Surveys Available!

The Cure HHT Research Network (“CHRN”) is an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians. The CHRN aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening the HHT scientific community, and encouraging global collaboration. Your participation in invaluable!

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