Cure HHT, the only patient advocacy organization in the world funding research, awareness and education for HHT (Hereditary Hemorrhagic Telangiectasia) patients, their families and the medical/scientific community, is pleased to announce that following 17 years of advocacy its federal funding request for U.S. HHT Centers of Excellence was included in the final spending bill that was recently signed into law by President Biden.
MONKTON, Md., April 27, 2022 /PRNewswire-PRWeb/ -- Cure HHT, the only patient advocacy organization in the world funding research, awareness and education for HHT (Hereditary Hemorrhagic Telangiectasia) patients, their families and the medical/scientific community, is pleased to announce that following years of advocacy its federal funding request for U.S. HHT Centers of Excellence was included in the final spending bill that was recently signed into law by President Biden.
HHT is the second most common genetic disease that causes bleeding, affecting an estimated 1.4 million people of all races and backgrounds globally. HHT affects 1 in 5,000 people, and is as common as Cystic Fibrosis, but receives far less funding and attention than other rare diseases.
The new National HHT Diagnosis and Treatment Initiative will provide $2 million in funds annually over the next three years to existing HHT Centers of Excellence (CoEs) in the U.S. to help expand staffing and improve infrastructure, as well as provide aid in the establishment of new CoEs. (See citation below.) Up until now, the 22 HHT CoEs that exist in the U.S. have had no access to federal funding despite HHT being the second most common genetic bleeding disorder in the U.S. The key objectives of the funding is to increase patient access to multidisciplinary care management at centers around the country, increase the number of new diagnoses to allow for timely treatment, and support research of a longitudinal study of HHT.
"This is a journey that began in 2005 and is a result of years of effort, time and investment to finally make this a reality," said Cure HHT Executive Director Marianne Clancy. "Although we have invested in and helped our scientific community leverage millions of dollars in grants from the National Institutes of Health (NIH), the Department of Defense (DOD), and other agencies, until now we were never recognized as an integral part of the federal budget. This marks a pivotal step forward, but much work remains as HHT continues to be highly misunderstood and frequently misdiagnosed."
HHT creates two types of vascular abnormalities, telangiectasias and/or arteriovenous malformations (AVMs), which are fragile and susceptible to rupture and bleeding, and untreated may result in lung and brain hemorrhage, stroke, heart failure and death. The most common symptom of HHT is frequent and severe nose bleeds, often dismissed, especially in children. One HHT diagnosis means there is a whole family of potentially affected people spanning generations. There is, as yet, no cure, but existing treatments can be effective if HHT is diagnosed early. Importantly, as many as 90% of those with HHT are unaware that they have the disease, which can have dire, even fatal consequences. Learn more at http://www.curehht.org
Cure HHT, which is headquartered in Maryland, recognizes CoEs that are equipped with the personnel, expertise, commitment and resources to provide comprehensive evaluation, treatment and education to individuals with HHT and their families. Designation as an HHT Center of Excellence follows 18 months of training, mentoring and site visits. HHT Centers of Excellence now join Sickle Cell Disease and Hemophilia in finally receiving the federal funding they need to operate effectively.
"Today Cure HHT is the cornerstone of a global movement, and we continue to expand and build our capacity," Clancy comments. "Cure HHT was selected as one of only 30 organizations to participate in the Chan Zuckerberg Initiative's (CZI) Rare As One Network, providing funding, tools, expansion support, and training to create a larger, more integrated HHT community. The momentum is with us to drive towards a cure for this disease."
Editor's Notes:
- Citation: The funding is being provided through: DIVISION H-DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELA TED AGENCIES APPROPRIATIONS ACT, 2022, signed into law by President Biden. March 16, 2022, it includes an appropriation for Hereditary Hemorrhagic Telangiectasia (HHT) Centers of Excellence.-The agreement includes $2,000,000 to establish a new competitive grant program for HHT Centers of Excellence, as described in House Report 117-96. See also: https://www.aamc.org/advocacy-policy/washington-highlights/president-signs-fy-2022-funding-bill-increases-research-health-programs
- Interviews can be arranged with Executive Director Marianne S. Clancy
- Interviews are available throughout the United States with patients and medical professionals at the HHT Centers of Excellence:
Augusta, Georgia
Aurora, Colorado
Baltimore, Maryland
Boston, Massachusetts
Chapel Hill, North Carolina
Chicago, Illinois
Cincinnati, Ohio
Cleveland, Ohio
Dallas, Texas
Little Rock, Arkansas
Los Angeles, California
Milwaukee, Wisconsin
New Haven, Connecticut
New York, New York
Philadelphia, Pennsylvania
Phoenix, Arizona
Pittsburgh, Pennsylvania
Portland, Oregon
Rochester, Minnesota
St. Louis, Missouri
Salt Lake City, Utah
Stanford, California
Media Contact
Tony Fusco, Fusco & Four, 1 617-363-0405, [email protected]
SOURCE Cure HHT
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