Draft:Cure HHT

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Cure HHT (formerly HHT Foundation International) is a United States-based nonprofit organization focused on hereditary hemorrhagic telangiectasia (HHT), a genetic blood vessel disorder.^[1][2] Founded in 1991, the organization supports individuals and families affected by HHT worldwide. The organization describes itself as the only patient advocacy organization worldwide solely focused on HHT.^[3]

The organization supports research and patient education related to HHT, and is connected with international clinical treatment guidelines for HHT published in medical literature, including the Second International Guidelines for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia published in the Annals of Internal Medicine in 2020,^[9] and the International Guidelines for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia published in Journal of Medical Genetics in 2011.^[10]

It also oversees a global network of HHT centers of excellence,^[11] with individual centers recognized at institutions such as UAB Hospital,^[12] Massachusetts General Hospital,^[13] and the University of Pittsburgh.^[14]

The organization was founded in 1991 by a group of patients' families and physicians.^[15] That same year, the first HHT center of excellence was established at Yale University School of Medicine by Dr. Robert I. White Jr.,^[16] who helped establish HHT treatment centers worldwide.^[17] The organization grew from three centers in North America by 1996 to nine centers by 2004.^[18]

In 2011, the HHT Foundation International convened a Guidelines Working Group that produced international guidelines for the diagnosis and management of HHT, published in the Journal of Medical Genetics.^[19]

In 2014, HHT Foundation International rebranded itself as Cure HHT.^{[better source needed]}

In 2020, Cure HHT was selected as one of 30 organizations to participate in the Chan Zuckerberg Initiative's Rare As One Network, which provided funding and organizational support to strengthen patient-led rare disease advocacy.^[20][21]

Cure HHT oversees a network of HHT centers of excellence in North America, with individual centers recognized at academic medical institutions.^[22] Centers must meet specific criteria established by the organization, including requirements for multidisciplinary teams, patient care coordination, research participation, and educational activities.^[23]

Medical literature has discussed the role of HHT Centers of Excellence in patient outcomes. A 2020 study published Cardiovascular Diagnosis and Therapy found that HHT patients systematically screened and treated at an HHT center of excellence had life expectancy comparable to control groups without the condition.^[24] Individual centers have been established at institutions including Johns Hopkins Medicine,^[25] UCLA Health,^[26] UCSF Health,^[27] and Stanford Health Care.^[28]

The organization provides research grants to support HHT-related studies. According to the organization, between 2004 and 2024, it invested approximately $2.1 million in seed grants, young investigator awards, and scientific conferences, which researchers subsequently leveraged into over $51 million in additional funding from sources including the National Institutes of Health, Department of Defense, and Food and Drug Administration.^[29]

The organization's grant programs include the Cure HHT Young Scholar Research Program for early-career investigators and the Dr. Robert I. White Jr. Award, an annual clinical award for physicians and health professionals within their first years of HHT-related work.^[30]

In 2026, the organization secured $3 million in federal funding for HHT Treatment Centers through the Health Resources and Services Administration, marking the first dedicated federal support for HHT centers after more than 15 years of advocacy.^[31]

• Hereditary hemorrhagic telangiectasia
• Rare disease
• Patient advocacy

• Official website