Renamed “Cure HHT” in 2014, the HHT Foundation International was founded by a passionate group of patient families and physicians, who shared a hope for a better future for those with hereditary hemorrhagic telangiectasia (HHT).
Since its establishment in 1991, Cure HHT has consistently been at the center of the national (US) and global effort to advocate for patients and families, raise awareness of HHT, guide and fund critical research, create lasting collaborations and encourage scientists to work on new treatments.
Hereditary hemorrhagic telangiectasia (HHT) is a genetic disorder that causes abnormalities of blood vessels, usually resulting in excessive bleeding (known as hemorrhaging).
About 13 percent of people with HHT have at least mildly elevated pulmonary artery pressures, which can be caused in primarily two very different ways: high output heart failure or through a gene mutation that causes HHT-associated pulmonary arterial hypertension.
The US Pulmonary Hypertension Association, PHA has developed a brochure on HHT which can be downloaded at this link on the PHA website.
The video of a webinar on this topic is also available at this link on the Cure HHT YouTube channel
A worldwide survey is currently under way to locate and collect data from PAH/HHT patients. This is the link to participate
Cure HHT is currently working with Stanford University and their HHT/PH center to collect blood from one family line to produce stem cells that will allow further research, including testing current and new drugs.
Find out more about Cure HHT
Facebook: https://www.facebook.com/hht.org
Twitter: https://twitter.com/hhtawareness
YouTube: http://www.youtube.com/HHTFoundation
Instagram: http://instagram.com/cure_hht