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HHT Research

Research is the Key to our Future

HHT Research makes exciting strides each year, gaining new insights into the cause, development, progression, and treatment of this disease.

Diseases can only be cured when scientists understand them. This understanding, which comes from basic research, leads to new drugs and treatments. To find good treatments, and ultimately a cure for HHT, we need to support the labs that do this research. The National Institutes of Health (NIH) in 2015 awarded $75 million for research on Cystic Fibrosis and $75 million for research on Muscular Dystrophy; both are rare diseases which occur at about the same frequency in the population as HHT. Yet HHT research received only around 2.5 million from NIH during that same period. Cure HHT is lobbying strenuously in Washington to increase the amount of grant funding awarded for HHT research. In the meantime, individual donations have allowed Cure HHT to fund young and established researchers with small “seed” grants. This “seeding” is working! A number of these investigators have gone on to win bigger grants from NIH that will support new research aimed at finding treatments and a cure for HHT. Support for basic research is the fuel that drives the engine of discovery!”

Christopher C. W. Hughes, Ph.D.

Chair, Cure HHT North American Science and Medical Advisory Council

Cure HHT wants to accelerate research and double the number of HHT scientists

New research is needed to understand the mechanism of disease

and identify targets for new therapies to treat HHT


  • Understanding normal gene functions will allow us to know what goes wrong in HHT.
  • Understanding how AVMs development can lead to targeting therapies to reverse the growth of AVMs and even prevent them from forming.
  • Being able to understand high-risk AVMs to prevent severe adverse events.
  • Every person is affected differently by HHT, even within the same family. A greater understanding of the role of modifier genes will help in the development of targeted therapies to treat HHT.
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