Accomplishments

We stand by our mission by increasing awareness, educating families and health care providers, championing improved health care, collaborating with HHT treatment centers, funding breakthrough research and advocating for HHT patients.

Funded Pioneering Research and Build Scientific Community

  • Funded 13 Research Grants
  • Supported 12 Young Investigator Grants
  • Sponsored 11 Scientific / Medical Conferences and sponsor of the only global organizations, HHT Global Research and Scientific Medical Board and North American Therapeutics Group
  • Leveraged HHT Foundation seed grants to million dollar NIH grants
  • Launched first non-surgical Multi-Center Clinical Research Study on nosebleed treatments

Enabled HHT Genetic Diagnostic Testing

  • Obtained release of HHT gene patents to make genetic testing possible for all patients in North America
  • Funded 3 Genetic Testing Laboratories in North America

Drove Significant Advances in Clinical Care

  • Established protocols for standardized care at an HHT Center of Excellence
  • Expanded and sanctioned 18 North American HHT Centers of Excellence
  • Committed to adding 2 new HHT Centers annually
  • Ongoing collaboration with research and health care economics studies
  • Supported the creation of HHT Clinical Guidelines for Screening and Treatment of HHT

Launched Public Awareness Campaigns

  • Produced first HHT Awareness Video
  • Conducted Continuing Medical Education courses to physicians and health care professionals
  • Ongoing participation in HHT education programs led by the Centers for Disease Control and Prevention
  • Hosted over 20 national and regional patient and family conferences with exclusive youth programs
  • Introduced the HHT Diagnosis and Treatment Act into the United States Congress

 

It is thanks to you, our members and donors, that the Cure HHT has been able to make progress in reaching our mission goals. Please click on the link to view some of our accomplishments from past years.