Cure HHT Announces Historic Federal Research Designation for Hereditary Hemorrhagic Telangiectasia

New PRMRP designation creates a dedicated pathway for HHT-focused research through the Department of Defense’s Congressionally Directed Medical Research Programs

MONKTON, MD. — May 19, 2026 — Cure HHT is proud to announce a historic milestone: hereditary hemorrhagic telangiectasia (HHT) has been included as its own eligible topic area in the Fiscal Year 2026 Peer Reviewed Medical Research Program, also known as PRMRP, through the Department of Defense’s Congressionally Directed Medical Research Programs.

For the first time, HHT is no longer included only under the broader category of vascular malformations. It now has a specific federal research designation.

This achievement follows years of sustained advocacy from patients, families, clinicians, researchers, and supporters who have worked to make the seriousness, prevalence, and research potential of HHT visible to federal decision-makers.

“This is a defining moment for the HHT community,” said Marianne Clancy, Chief Executive Officer of Cure HHT. “For years, families impacted by HHT have lived with a disease that is too often misunderstood, underdiagnosed, or overlooked. This federal designation brings HHT into clearer focus and opens the door for the kind of research investment that can change what is possible for patients and families.”

PRMRP is one of the medical research programs managed by the Congressionally Directed Medical Research Programs. It supports innovative, high-impact research with relevance to service members, veterans, their families, and the broader public. In FY26, PRMRP received $370 million in appropriated funding across 52 topic areas.

The inclusion of HHT as its own topic area allows researchers to submit applications specifically focused on hereditary hemorrhagic telangiectasia, rather than relying on a broader vascular malformation category. Cure HHT believes this change can help attract new investigators, strengthen the HHT research pipeline, and support studies aimed at improving diagnosis, care coordination, treatment guidelines, and therapeutic development.

HHT is the second most common inherited bleeding disorder, affecting nearly 1 in 5,000 people worldwide. Despite its prevalence, HHT remains significantly underdiagnosed and can take decades to identify. The disease causes abnormal blood vessels to form in the nose, gastrointestinal tract, brain, lungs, liver, skin, and mucous membranes. When undetected or untreated, these malformations can lead to severe anemia, stroke, hemorrhage, heart failure, pulmonary hypertension, and premature death.

Many complications of HHT are preventable when the disease is recognized early and managed through specialized care. Yet too many individuals and families still face delayed diagnosis, fragmented treatment, and limited access to providers familiar with the condition.

Research in HHT also has implications beyond the HHT community. Studies related to vascular malformations and HHT biology can contribute to a deeper understanding of bleeding, aneurysms, cardiovascular disease, traumatic brain injury, cancer, and other conditions relevant to both military and civilian health.

Cure HHT will continue advocating to protect and renew the HHT designation in future fiscal years, including FY27, while encouraging researchers and institutions to pursue HHT-focused PRMRP opportunities.

“This win belongs to every person who sent a message, shared their story, met with lawmakers, educated their community, or helped someone understand why HHT research matters,” said Clancy. “Federal recognition does not happen by accident. It happens when a community stands together and keeps showing up.”

About Cure HHT

Cure HHT is the leading patient advocacy organization dedicated to improving the lives of people affected by hereditary hemorrhagic telangiectasia through education, awareness, research, advocacy, and access to expert care. Cure HHT works to advance diagnosis, treatment, and scientific discovery while supporting a global community of patients, families, clinicians, and researchers.