As members of the HHT community, you have been asking us to help get the HHT word out to the public at large. The HHT Foundation has taken action by producing this video and the associated toolkits on our website. Increasing HHT awarenss is critical to advancing HHT research and therapies, public and medical professional outreach, and physician education.

Now, it is your turn to Take Action!  We need you to spread the word about HHT by:

1.  Watching the video
2.  Passing the video link, http://video.hht.org,  on to your family, friends, local media, and social media sites
3.  Contacting your congressional members
4.  Utilizing the toolkits and resources available on the HHT Foundation website
          Fundraising Toolkits and Ideas
          Press and Media Toolkits
          Legislative Toolkit

All uses of this video, More Than a Nosebleed: HHT, are to benefit the HHT Foundation International, Inc. and all of the families that we support around the world. To maximize the return on our investment, we need your participation  in this Awareness Campaign.

WE WANT TO HEAR FROM YOU! Send a message to Cathleen Kinnear and let us know (1) how the video impacted you; (2) how you have used the video to educate more people about HHT; (3) what ACTION you have taken to increase HHT awareness.

Everyone at the HHT Foundation - Board of Directors, Executive Director, and staff - is excited about the opportunities that will present themselves through this HHT Awareness Campaign. Join us in spreading the word about HHT so we can turn hope into reality... A cure for HHT!

As stated in the article, "Hereditary Hemorrhagic Telangiectasia (HHT) shows considerable variation in clinical manifestations, suggesting environmental and / or genetic modifier effects." Pulmonary arteriovenous malformations (PAVMs - pictured) are found in approximately 50% of patients with HHT. Therefore, it is important for us to understand the development of PAMVs in order to determine possible drug therapies. 

In 2008, the HHT Foundation awarded Dr. Akhurst a $50,000 research grant to study gene modification. It was anticipated that Dr. Akhurst's research would open up a whole new area of investigation as it addressed a fundamental question in HHT - What gene(s) act in concert with endoglin and ALK1 to predispose certain patients to the development of PAVMs? It was thought that this modifiable gene, in stark contrast to the original two genes (which are receptor genes and difficult to target for the formulation of therapeutic agents), may give us an easier pathway for treatment. This was the first HHT Foundation study to be funded that partners basic laboratory research with clinical research and was conducted in collaboration with HHT Centers in France and The Netherlands.

The research is now complete and the results have been published in NATURE's online journal.  Dr. Akhurst et al. "analysed two European cohorts of patients and identified single nucleotide polymorphisms in PTPN14 that are associated with the presence of pulmonary malformations". According to Dr. Akhurst, "This is a basic study in molecular mechanism. We have identified a gene that differs between individuals and, depending on which form of the gene is inherited, this influences the risk for PAVM in HHT patients. We have also shown that this gene connects into the ACVRL1 and EphrinB2 Pathways. This tells us more about molecular pathways downstream of ACVRL1, which is essential for future drug development or drug strategies (for HHT and for angiogenesis in general). "  

READ (pdf) the paper entitled, "Mouse and human strategies identify PTPN14 as a modifier of angiogenesis and hereditary hemorrhagic telangiectasia", that was published online on January 10, 2012 in nature communication (scroll to the bottom of the page).

CLICK HERE to read about the other research studies that were funded by the HHT Foundation in 2008.

Dr. Raj Kasthuri, assistant professor of hematology and oncology in the UNC School of Medicine, is director of the new HHT Center and is a member of the UNC Hemophilia and Thrombosis Center (HTC) as well as the UNC McAllister Heart Institute.

In 2008, Dr. Kasthuri attended the CDC meeting, ‘HHT Health Initiatives for the 21^st Century’ as a representative of the HTC community. As a hematologist, Dr. Kasthuri was convinced that he had HHT patients that were undiagnosed. He returned to UNC with a passion for HHT and immediately began speaking with Dr. Gossage, Medical Director for the HHT Foundation, to learn more about HHT and what was required to become a center of excellence.  Since that time, Dr. Kasthuri, and several of his staff members, have visited and received training from the Medical College of Georgia and Yale University. In addition, Dr. Kasthuri’s expertise in anemia and iron deficiency has become a valuable resource to other HHT Centers.

“Dr. Kasthuri has organized a team of specialists at UNC at Chapel Hill who are knowledgeable in the treatment and care of HHT. We are really excited about this new collaboration,” said Marianne Clancy, executive director of the HHT Foundation International.

Print UNC at Chapel Hill Announcement Flyer

Link to a full list of  national and international HHT Centers of Excellence

University of  Texas - Southwestern

Dallas, Tx

The HHT Foundation Board of Directors has made increasing access to HHT professionals a priority. By adding new Treatment Centers of Excellence, diagnosis and treatment of HHT will be more affordable.

The HHT Foundation is thrilled to announce a new partnership with the University of Texas, Southwestern in Dallas, TX. Dr. Daniel Goodenberger, Director of the UT Southwestern HHT Center of Excellence, has been coordinating care and treatment of HHT patients for decades and has organized a full team of HHT specialists.  This center will serve the Southwest U.S.

Dr. Daniel Goodenberger, Director of the new HHT Treatment Center of Excellence, has organized a team of specialists who are knowledgeable in the care and treatment of HHT. The staff of HHT specialists at UT Southwestern in Dallas are ready to serve you and your family. All members of the team are enthusiastic about their new role in the HHT community and they are thrilled to be in full collaboration with the HHT Foundation.

Click Here to download the staff directory for the UT Southwestern HHT Center.

Click Here to learn more about our other HHT Centers of Excellence.