HHT Foundation

A true catalyst for a cure!

" To wrest from nature the secrets which have perplexed philosophers in all ages, to track to their sources the causes of disease, to correlate the vast stores of knowledge, that they may be quickly available for the prevention and cure of disease-these are our ambitions,"

-- Sir William Osler

HHT afflicts the lives of more than 1.4 million people worldwide with most unaware that "nosebleeds in the family" can be something much more and potentially life threatening. The HHT Foundation is the only patient advocacy organization in the world solely focused on HHT patients. You can be sure that your investment in the HHT Foundation will go to the highest-return initiatives that can improve life of HHT patients today and in future generations by:

  • Providing "seed money" for research on promising therapies
  • Improving access to care by adding more HHT Treatment Centers
  • Building a registry of HHT patients to find which treatments work best
  • Standardizing HHT treatments to ensure patients get global best practices

Investing in HHT

An Investment in Your Family's Future

Marianne Clancy, Executive Director of the HHT Foundation, recently sat down with an HHT donor family to update them on the progress of a research project they funded. They went on to say “Our investment in HHT has the promise of being one of the best performers in our portfolio.  What makes this so interesting is, at first we thought it was charity but seeing the results of the project we realized it was really an investment in our family’s future.” They said their financial advisor was also in favor of them making another investment in HHT.  After hearing the rest of their story, we asked if we could share it with our members.  They agreed only if we could continue to maintain their anonymity.  Click HERE to read their story.

HHT Foundation and HHT Treatment Centers

Every year, the HHT Foundation receives phone calls, emails, and letters asking about the differences between the HHT Foundation and the HHT Centers of Excellence. On the surface, we may look and act as one entity but the reality is that we are completely separate institutions. Click HERE to read "A tale of separate institutions working toward a common goal".

This website is operated by the Hereditary Hemorrhagic Telangiectasia Foundation International, Incorporated. HHT Foundation International is a worldwide, non-profit organization whose purpose is to support patients and families and educate medical professionals. This site is dedicated to the individuals and medical professionals who encounter the daily challenges of managing Hereditary Hemorrhagic Telangiectasia (HHT) also known as Osler-Weber-Rendu Syndrome. HHT is a genetic disorder, which affects blood vessels. This disorder is worldwide affecting males and females of all races and ethnic groups. Up to 1/3 of HHT patients can have multiple organ involvement, which can be disabling and/or life threatening. HHT can be treated successfully if correctly diagnosed.

If you have any comments or questions about the site, please email us at [email protected].