Cure HHT to Present Congressman David E. Price with its “Champion Award” at Launch of Multi-State Pilot Program Headquartered at UNC Chapel Hill

Cure HHT, the national advocacy organization for people with the rare hereditary disease HHT, will present its “Champion Award’ to Congressman David E. Price (D-NC, 4th District) on Thursday, August 24 at 5:00pm at the Carolina Club at UNC, Chapel Hill. The University is the site of one of 25 Cure HHT “Centers of Excellence” in the United States and Canada where people with HHT disease can go for treatment, and is headed by Associate Professor Raj Kasthuri, MD.

Hereditary Hemorrhagic Telangiectasia (HHT) is a cruel and unrelenting disease, affecting families for generations. While it can have seemingly mild symptoms like frequent nosebleeds, it can result in disabling and catastrophic events. This hereditary disorder creates abnormalities in blood vessels. They are fragile and thus susceptible to rupture and bleeding, which can result in lung and brain hemorrhage, stroke, and death. HHT, like ALS, is a rare disease, affecting an estimated 1 in 5,000 people, but it receives far less research grants and is often misdiagnosed. For more information visit www.CureHHT.org.

Cure HHT recently celebrated 25 years of building awareness of HHT, educating the public and medical professionals, leveraging funding for research, and advocating for patients and families affected by the disease. In order to provide expert, multidisciplinary care for people with HHT, Cure HHT has helped establish 25 Centers of Excellence over the last 2 decades.

“Unfortunately our current Centers of Excellence can’t reach everyone affected by the disease,” comments Cure HHT’s Executive Director Marianne Clancy. “There is so much more work to be done on this disease. Due to lack of awareness by both the public and medical providers, it can take as long as 30 years for someone to be properly diagnosed. Only ten percent of the people who have HHT are aware of it.”

In many ways the treatment and management of HHT can be compared to treatment for hemophilia, the hereditary condition where the blood fails to coagulate. Due to the efforts of The National Hemophilia Foundation, created in 1948, there are currently more than 130 federally funded Hemophilia Treatment Centers in the U.S. Many of these have teams of doctors and specialists such as hematologists, genetics counselors and nurse coordinators.

While Cure HHT will continue to build the number of its Centers of Excellence, working with Dr. Kasthuri it proposed a pilot program where three Hemophilia Treatment Centers would receive guidance and training to allow them to serve HHT patients as well. If successful, this could potentially expand access to care significantly for HHT patients, especially in areas where no HHT Center of Excellence exists.

All that was needed was the funding to make the pilot program a reality. Enter Congressman David Price who made securing federal funding for the pilot program one of his three top legislative priorities. “I was inspired by the leadership of the team at UNC and Cure HHT in their efforts to leverage existing infrastructure to bring comprehensive care to an underserved community of patients,” said Rep. Price. “I’m optimistic that a successful pilot program will serve as a model for communities across the country to bring awareness and treatment to those affected by this disease.”

The event on August 24th will celebrate the launch of the pilot program, and include the presentation of the Cure HHT “Champion Award” to Congressman Price “for his leadership in securing funding of a new HHT pilot initiative.” Prior to the event, the Congressman along with Cure HHT Executive Director Marianne Clancy and Chapel Hill HHT Center Director Dr. Raj Kasthuri will tour the UNC HHT Clinic and meet some of the patients.