News & Impact
Research findings, community milestones, and the measurable progress being made against hereditary hemorrhagic telangiectasia (HHT).
Our standard
How we report progress
Progress in a rare disease is easy to overstate. A promising laboratory result is not a treatment, and a treatment that exists is not the same as one people can obtain. We try to be clear about which stage a development has actually reached.
Where a finding is preliminary, we say so. Where a result is negative, we report it anyway, because in a field this small a study that did not work saves the next team from repeating it. Where something has genuinely changed for patients, we say what changed and for whom.
The same applies to the numbers below. Each one is something that can be counted and checked, not an estimate of goodwill.
What we are working toward
The mission every one of these updates is measured against
Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.
Three goals carry that mission. Find the people who have HHT and do not know it. Treat them properly, wherever they live. Cure the disease itself. Every item in the news, every story, and every milestone on this site belongs to one of those three.
44%
More new patients seen at HHT Centers of Excellence since federal funding was secured
15
Therapies now in the HHT pipeline, up from three in 2022
55+
HHT Centers of Excellence worldwide, grown from a single center
80%
Of people with HHT are still undiagnosed, which is the work that remains
Figures reflect the most recent published Cure HHT reporting. The full detail behind each one is in the Impact Report.