We are building a registry for patients diagnosed with HHT.
As people from all over Australia are invited to submit information about their experience with HHT, we will be able to pool together records from many different people. This will help us to better understand the experience of those diagnosed with HHT and to help develop new treatments for them.
This project has been granted ethical approval by the nationally recognised Human Research Ethics Committee based at Royal Melbourne Hospital, Australia.
Sharing your experience is an important way of expanding knowledge around HHT, which
aids treatment and supports research into long-term cures.
Thank you for your support!
The HHT Alliance stands for:
- H: Hope – Hope for a future cure
- H: Health – To understand the Health of those diagnosed with HHT
- T: Treatment – To promote research into new treatments and management of HHT
WE NEED YOU to be part of our ALLIANCE to help find a cure for HHT.