New Federal Momentum for HHT: $3M for Centers and Dedicated Research Eligibility

By Valaree Machen | February 3, 2026 |

We are thrilled to share two major wins to celebrate today: the President has signed the FY26 funding agreement which includes $3,000,000 for HHT Treatment Centers and—huge for the research world—“Hereditary Hemorrhagic Telangiectasia (HHT)” is listed as its own eligible topic area under the Peer Reviewed Medical Research Program (PRMRP)! Next stop: the President’s signature to make it law.

What The $3M Means For The HHT Community

The FY26 agreement includes $3,000,000 for “Hereditary Hemorrhagic Telangiectasia” under Health Resources and Services Administration (HRSA)’s Maternal & Child Health block grant special projects (SPRANS).

In plain terms: this is a federal investment in the systems that make HHT care work—expert clinical teams, coordination across specialties, and getting more people to the right care faster.

What that supports, in practice:

Sustaining and strengthening HHT Center capacity (staffing support, care coordination workflows, and patient access improvements).
Expanding access to high-quality HHT diagnosis and treatment—so fewer families across the country are stuck in the “years-to-diagnosis” loop.
Building better coordination across specialties (ENT, pulmonary, neuro, GI, hepatology, genetics, IR, and beyond).
Through the CHORUS registry, patients may opt in for collecting and using de-identified data to understand outcomes and improve care nationally—exactly the type of work HRSA describes for the HHT Center program.
Expanding Continuing Medical Education programs so more community physicians are better able to identify patients who may have HHT and refer for screening, treatment, and management

Bottom line for HHT patients and families: earlier diagnosis, more educated physicians, this win means more organized care, fewer missed complications, and a stronger national infrastructure, so HHT isn’t a “figure it out yourself” diagnosis anymore.

What Changes Now That HHT Has Its Own PRMRP Designation

This designation is research accelerant: the FY26 Defense agreement language explicitly lists “Hereditary Hemorrhagic Telangiectasia (HHT)” among the PRMRP’s eligible research areas.

Why that matters for the research community:

HHT becomes a named, eligible lane—not something researchers have to squeeze under a broader umbrella (like “vascular malformations”) and hope reviewers connect the dots.
Clearer signaling to scientists and institutions: HHT proposals are welcome here. That tends to draw in new investigators, new collaborators, and more varied approaches.
More predictable funding pathway: PRMRP funding opportunities are built around the congressionally specified topic areas; being explicitly listed helps HHT compete on its own merits within that program structure.
Better alignment with impact: researchers can more directly propose work on HHT-relevant outcomes—screening, complications, treatment strategies, and care delivery—without needing to justify HHT as a “subset” of something else.

Net-net: this makes it easier to fund HHT-focused science, easier for new researchers to enter the field, and harder for HHT to be overlooked.

We know that these wins come after years of frustration, hard-earned hope, and losses that never should have happened. We didn’t get here alone—patients, families, clinicians, researchers, advocates, and supporters carried this forward together.

Now we get to do what matters most: turn this momentum into better care, faster diagnosis, and more research—so that one day, families won’t have to fight nearly as hard to be seen, believed, and treated. And one day, we stop losing people to HHT.

Let’s harness this moment. Celebrate this victory by making a donation to support Cure HHT’s mission, or join us in Washington, DC this March to keep pushing for the change our community deserves.

“This is a win worth celebrating—and a reminder of what happens when our community shows up. We’re grateful, we’re energized, and we’re focused on what comes next: expanding access to expert care and driving research forward. Cure HHT will continue to harness this momentum and keep building the future HHT families deserve.”