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Cure HHT Research Strategies

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.

Cure HHT Resource Center

  • Implement a Help Line for information and referrals
  • Keep website current with clinical trials, new treatments, educational activities, and more
  • Update website Resource Library with most current clinical and scientific articles
  • Host webinars for patients and clinicians on relevant HHT topics
  • Create and disseminate educational materials for patients and clinicians
  • Increased social media presence

Investment Goal: $300,000

Targeted Professional Awareness

  • Develop physician education materials for all HHT-related specialists
  • Disseminate International HHT Guidelines to medical professionals and affiliated professional societies
  • Present educational sessions on HHT-related topics at subspecialty medical meetings
  • Develop marketing initiatives to enhance medical professional awareness of HHT
  • Global outreach to under-represented patient and medical communities

Investment Goal: $50,000

Dissemination of the International HHT Guidelines

  • Disseminate new (2020) clinical guidelines to HHT specialists, community physicians and patients through ongoing outreach and education
  • Improve standardization and quality of care across all HHT Centers of Excellence
  • Sponsor receptions at HHT-specialist professional society meetings
  • Partner with HHT-related professional societies to share Cure HHT materials, events, and guidelines with their national and international members

Investment Goal: $10,000

Re-energize existing HHT Centers

  • Standardize care across all HHT Centers and provide ongoing education and collaboration opportunities
  • Advocate for federal funding to support HHT Center Coordinators
  • Host physician forum to allow multi-discipline conversations about the care of HHT patients, especially for difficult cases
  • Provide tools and resources to enhance how the HHT Centers operate

Investment Goal: $150,000

Clinician Development

  • Provide ongoing outreach to clinicians globally through webinars, listserv's, newsletters keeping clinicians current on all HHT-related treatments, clinical trials, conferences
  • Partner with HHT-related professional societies to increase the number of HHT specialists by educating physicians-in-training
  • Award Clinical Fellow grants for HHT-related clinical research projects that will be presented at a national meeting and/or published in a scientific journal
  • Awad travel grants for Residents and Fellows to attend professional meetings to present their HHT-related research data

Investment Goal: $60,000

Fund HHT Scientific Research

  • Determine gaps in HHT-research, prioritize research initiatives, and facilitate clinical and scientific collaborations through the patient-led Cure HHT Research Network
  • Recruit medical and business experts to strategically review drugs approved for other conditions
  • Investigate other molecules potentially useful in HHT treatment
  • Consult with biotech and emerging pharmaceutical companies to advance new HHT therapies
  • Explore private partnerships for HHT drug development

Investment Goal: $500,000

International HHT Scientific Conference

  • Biennial HHT conference to bring clinicians and scientists from around the world together to discuss the latest advances in HHT research
  • Offer travel awards to young scholars presenting their HHT research data
  • Host international meetings for the Global Research and Medical Advisory Board, Cure HHT Research Network, HHT Center Directors and other collaborative groups
  • Explore HHT research initiatives through clinical and basic science workshops

Investment Goal: $100,000

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