What the HHT?
A blog for the HHT community
Awareness
Webinar: Mental Health & HHT
Webinar: Mental Health & HHT Tues., June 24th | 12:00 p.m. (ET) Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique physical challenges, and this webinar will address the often-overlooked impact on mental well-being. Join us for a supportive discussion exploring the emotional aspects of managing a chronic condition like HHT. Our expert speaker Abbey J.…
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 MoreYour donations do more than you may realize
Hi! For those who may not know me, I’m Cassi Friday and I’m the Director of Research here at Cure HHT. That’s not the only hat I wear — My husband, Anthony has HHT, and I’m a mom of three little kiddos, two who also have HHT. It goes without saying, I’m deeply passionate about…
Read MoreCelebrate Rare on Rare Disease Day (Feb 29th)
Rare Disease Day® is February 28th! This year, Rare Disease Month is particularly special as it marks the 40th anniversary of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare disease, including the HHT community!
The law helps incentivize and catalyze rare disease research. With the help of ODA and years of Cure HHT’s own advocacy efforts, we now have three clinical trials underway in HHT!
Read MoreHHT June Awareness Month
Just one HHT diagnosis has the potential to save the lives of many! As a genetic disorder – passed down from parent to child – the diagnosis of HHT for a single family member can branch into answers and life-saving treatments for several generations of a family! When we say HHT awareness saves lives…it’s not an exaggeration.
Though we have made great strides in shining a light on HHT over the years, we still need your support to make HHT a more recognized disease! Donate today to help HHT Awareness take root in your community — plant the seed of awareness!
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