Cure HHT has developed a strategic initiatives plan that will create the building blocks necessary to find a cure for HHT in our lifetime. One of the most distinctive aspects of Cure HHT's research program is our seed grant funding strategy. As the only organization in the world solely devoted to the welfare of HHT patients and their families, Cure HHT has developed a strategy based on our mission to:
- FIND HHT patients by increasing awareness of the disorder
- TREAT the symptoms of HHT with advanced treatments
- CURE the disorder through medical or genetic therapies
- FUND the goals above from public and private sources
Given the limited resources of Cure HHT, it is necessary to carefully prioritize the initiatives we undertake. Not all of the priorities identified can be funded from current resources, but they provide a road map for how Cure HHT will invest as funds become available. Our top priorities for 2017-2018 are detailed below.
If you are interested in helping us fund these initiatives, please click on the donate button at the top of this page or call Cure HHT at 410-357-9932.
Expand HHT Awareness
- Increase access to information for patients and medical professionals
- Primary educational resource for physicians and 4 million individuals affected worldwide
- Support for families in need of education and treatment referrals
- Increase physician education through webinars by HHT experts
Investment Goal: $60,000
HHT Outcomes Registry
- Collect patient data allowing HHT physicians to conduct natural history studies as a critical step in engaging pharmaceutical and biotech companies and furthering HHT clinical trials
- Determine therapy outcomes and the personal factors that affect these outcomes
- A fast, efficient, powerful research engine linking North American HHT Centers
- Recruit HHT patients for targeted trials
Investment Goal: $300,000
Therapeutic Advances Group (HHT-TAG)
- Create new opportunities for effective HHT therapies in all stages of development
- Develop comprehensive and structured approach to these opportunities and a dedicated committee to oversee and act on most promising therapies
- Enable collaborative initiatives among funders, scientists, doctors and patients
Investment Goal: $300,000
Update Clinical Guidelines
- Incorporate new therapies and diagnostics for adults and children with HHT
- Physicians worldwide rely on these guidelines to diagnose and treat HHT families
- Update through international consensus of published evidence
Investment Goal: $150,000
- User friendly app for patients to track nosebleeds, iron levels, hemoglobin, and treatments.
- Patients can use this to track changes in their manifestations of HHT and easily share them with their physician.
Investment Goal: $20,000