Policy changes when people refuse to remain invisible.
Federal investment in HHT care and research did not appear on its own. It came from patients, families, and clinicians sitting across a desk from the people who write the budget. What happens next depends on who is willing to speak up.
Why advocacy matters
Recognition is not symbolic. It is funding.
When a disease is named in a federal research program, laboratories can apply for money that was previously closed to them. When Centers receive public investment, coordinated care reaches people who could not otherwise travel to it. When HHT enters medical education, the 27-year diagnostic delay gets shorter.
Cure HHT brings advocates to Washington and puts them in offices. Representatives sign on after hearing from families, not after reading a policy brief. That is the mechanism, and it is repeatable.
What it has produced
FY2026
HHT-specific eligibility in the Peer Reviewed Medical Research Program
Centers
Federal investment in HHT Centers of Excellence
Access
Continued pressure on coverage and access to specialty care
Let your voice be heard
Three ways to be heard
Some of this happens in a congressional office in Washington. Some of it happens from your kitchen table. Both count, and both are needed.
In person, once a year
Come to Capitol Hill Day
Spend two days in Washington meeting the people who decide what gets funded. Cure HHT books the meetings, writes the materials, and trains first-time advocates the day before. You bring your experience, which is the part nobody else can supply.
You do not need to know anything about policy. Most people who go have never done it before.
From anywhere, any time
Write to your representatives
A letter from a constituent who lives with the disease carries more weight than a hundred pages from an organization. Say who you are, say what HHT has cost you, and say what you are asking for.
Local and state officials matter too. A mayoral proclamation in June costs nothing and puts HHT in a press release.
Two minutes, once
Be ready when it counts
What Cure HHT is asking for changes with each session of Congress, and the moments that decide it are short. A bill moves, a comment period opens, a committee needs to hear from constituents this week.
Advocacy alerts tell you what is happening and exactly what to do, only when there is something worth doing.
Cure HHT runs initiatives and action alerts at local, state, and federal levels, and priorities shift as legislation moves. The alerts list is the reliable way to know what is live right now.