Invitation: 2026 HHT Capitol Hill Day in Washington, DC
Editor’s Note: This article has been updated to reflect a change in scheduling from the original printed newsletter.
Over the last decade, HHT has finally started breaking through the noise. More research. More trials. More recognition from national leaders and institutions that once overlooked us entirely. And as inspiring as this progress is, I need to say something plainly: none of it happens without you.
Every advancement we’ve made has been fueled by patients and families who stepped forward — who told their stories, who demanded better, who refused to let HHT remain invisible.
And in 2026, we have a chance to make the loudest impact yet.
We are heading back to Washington, DC to advocate for HHT on Tuesday, March 17, 2026 and Wednesday, March 18, 2026, and I cannot overstate how pivotal this moment is. We are working through a time of shifting federal priorities, tighter budgets, and increasingly competitive funding. This is our moment to stand in front of lawmakers and advocate for what HHT families need — and why continued federal support is not optional.
Hill Day has power because of one thing: people showing up. When 10 patients walk into an office, it’s moving. When 50 walk in, it’s undeniable. And here’s the piece we cannot forget: even our smaller advocacy efforts in past years have led to meaningful change — increased awareness, new partnerships, and early congressional champions who are still with us today. If that’s what we accomplished with small groups, imagine what could happen when we arrive as a true crowd.
When the hallways fill with families, caregivers, and clinicians speaking with one unified voice, priorities shift. Legislators ask follow-up questions. Staff lean in. Doors that were once shut begin to open. That’s when funding becomes possible.
And the urgency is real. We’re entering a phase where research and clinical trials are accelerating, but policy has not kept pace. We need congressional support for data infrastructure, for programmatic initiatives, for expanding access to specialized care. Decisions made in the next few years will determine whether families nationwide receive timely diagnoses, effective treatments, and the healthcare networks they depend on.
Your presence helps determine that future.
Participating is easier than you might think. You don’t need to be a policy expert. You don’t need a polished speech. You simply need to show up, walk with us into meetings, and — if you’re willing — share even a small piece of your experience living with, caring for, or loving someone with this complex disease. Those are the moments lawmakers remember long after we leave the room.
I’ve seen the impact firsthand. Offices that once said, “We’ll look into it,” became champions after meeting real people. Members of Congress referenced personal stories in committee discussions months later. And soon, your voices were echoing far beyond the buildings on Capitol Hill.
If you’ve ever wished for better care. If you’ve ever waited years for answers. If you’ve ever felt alone in this journey. If you want the next generation to inherit something better…
This is your moment.
Join us in Washington. Stand up for the HHT community. Help make HHT impossible to overlook — and impossible to delay.
Let’s make 2026 the year lawmakers finally recognize the urgency we live with every day and commit to the progress we know is possible.
I hope you’ll be there with us!
Crystal Cottrill
National HHT Coordinating Center
Grant Manager, Cure HHT
This letter is featured within the 2026 Winter Newsletter, now available digitally. Find important resources, announcements, programs, stories from staff, community updates, and more. Download your copy today.