HHT Connect, the global registry
HHT Connect is the first global patient registry for hereditary hemorrhagic telangiectasia (HHT). It collects health information from as many people with HHT as possible, so that researchers and doctors can find the patterns that lead to better understanding and new treatments.
You take part by completing surveys online. Information is held on an encrypted server, participation is free and entirely voluntary, and it is open to people with HHT anywhere in the world.
The rarity and complexity of HHT are exactly what make it hard to study. The more people who enroll, the more can be learned.