Cure HHT
Grant award contract & patent policy
This will help get funding to a research team for an important HHT project.
Posted July 28, 2026
Work & Deliverables
We have a standard contract we send to researchers we are awarding grant funds to - we received a redline copy back from the Broad institute and I don't agree with some of their changes, but we want a legal opinion on it. Some of it involves our patent policy, which I think is pretty institution-friendly. We also would like for that to be examined and updated if deemed necessary.
Cure HHT
Cure HHT is an international advocacy organization supporting and providing educational services patients and families with the rare blood vessel disease, Hereditary Hemorrhagic Telangiectasis (HHT). We were formed in 1991 and have evolved in supporting and funding research, collaborations, and have 32 multi-diciplinary Centers of Excellence in North America and 21 globally. HHT is the 2nd most common inherited bleeding disorder with no approved FDA therapies. We have increased capacity through the Rare As One Grant and opened a therapeutic arm of our organization. We participated in 3 clinical trials-1 in which we have taken forward ourselves and received $6.2M in funding for this Phase II III clinical trial from the Department of Defense and the FDA. We will be launching our patient reported registry in April 2023 to obtain important deidentified patient information on their disease. We received a 3 year grant from the Health Resources and Services administration to support 15 Centers of Excellence in the U.S. With focus on increasing access to coordinated care and development of a continuing medical education program, we are creating more awareness leading to increased diagnosis and treatment. A third element of the program is a research registry recruiting patients seen at HHt Centers of Excellence. We have received IRB approvals and are launching a biorepository in which we will make tissue samples available to researchers .
Cure HHT
Cure HHT is an international advocacy organization supporting and providing educational services patients and families with the rare blood vessel disease, Hereditary Hemorrhagic Telangiectasis (HHT). We were formed in 1991 and have evolved in supporting and funding research, collaborations, and have 32 multi-diciplinary Centers of Excellence in North America and 21 globally. HHT is the 2nd most common inherited bleeding disorder with no approved FDA therapies. We have increased capacity through the Rare As One Grant and opened a therapeutic arm of our organization. We participated in 3 clinical trials-1 in which we have taken forward ourselves and received $6.2M in funding for this Phase II III clinical trial from the Department of Defense and the FDA. We will be launching our patient reported registry in April 2023 to obtain important deidentified patient information on their disease. We received a 3 year grant from the Health Resources and Services administration to support 15 Centers of Excellence in the U.S. With focus on increasing access to coordinated care and development of a continuing medical education program, we are creating more awareness leading to increased diagnosis and treatment. A third element of the program is a research registry recruiting patients seen at HHt Centers of Excellence. We have received IRB approvals and are launching a biorepository in which we will make tissue samples available to researchers .