What the HHT?
A blog for the HHT community
Posts by Valaree Machen
Urgent Action Needed: Protect Funding for HHT Research
Dear HHT Community, We need your help right now to protect critical funding for HHT research. As early as this Tuesday, the House will be voting on a Continuing Resolution to fund government programs through the end of Fiscal Year 2025. Unfortunately, the legislation cuts funding for the Department of Defense’s Congressionally Directed Medical…
Read MoreDiagonal Therapeutics Initiates Natural History Study of Adults Living with Hereditary Hemorrhagic Telangiectasia (HHT), a Rare Bleeding Disorder with No Approved Treatments
Diagonal Therapeutics Initiates Natural History Study of Adults Living with Hereditary Hemorrhagic Telangiectasia (HHT), a Rare Bleeding Disorder with No Approved Treatments Study conducted in partnership with Cure HHT will inform future clinical trials and treatment options for people living with HHT Company recently progressed DIAG723 into IND-enabling studies for HHT and pulmonary arterial hypertension…
Read MoreInnovative Hematology Achieves Prestigious HHT Center of Excellence Certification
We are thrilled to share that Innovative Hematology, home to the Indiana Hemophilia and Thrombosis Center (IHTC), has officially earned the coveted designation as an HHT Center of Excellence. This marks another significant step forward in our fight to increase access to specialized care for our community. This prestigious certification places Innovative Hematology among an…
Read MoreImportant FDA Update Regarding Iron Infusions
There’s been a change to the safety label for Injectafer®, an iron infusion often used to treat iron deficiency. The FDA now includes HHT as a risk factor for developing symptomatic hypophosphatemia (low phosphate levels), a condition that can affect up to 70% of patients who receive Injectafer. This important update comes from Cure HHT’s…
Read MoreVolunteers Needed! Join Cure HHT on Capitol Hill
We are calling upon volunteers to Join us in Washington, DC, for HHT Hill Day and be the voice that drives change! Your presence can help make a powerful impact for the HHT community! Our organization exemplifies the Little Engine That Could, and a large part of that success is derived from the community of…
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