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Join us in Washington for the National CHD Advocacy Summit!

  • May 19–20, 2026, Washington, D.C.
  • Courtyard Washington Downtown/Convention Center 901 L St NW, Washington, DC 20001
  • $100 per person
Register Now
Hotel Info

The National CHD Advocacy Summit will bring together patients, families, clinicians, researchers, and advocates to elevate congenital heart disease (CHD) as a national health policy priority.

This is an opportunity to bring your voice to Washington and be part of a growing movement working to ensure CHD is understood and prioritized at the federal level.

Over two days in Washington, advocates will build advocacy skills, strengthen relationships across the CHD community, connect with innovators, and meet with policymakers to educate them on the impact of federal investment in CHD research, care and innovation.

Why This Summit Matters

Congenital heart disease affects 1 in 100 babies and millions of adults in the United States. Despite its prevalence and lifelong impact, CHD remains underfunded and underprioritized in federal health policy.

The National CHD Advocacy Summit is designed to elevate by equipping advocates with the tools, stories, and policy education needed to drive real change on Capitol Hill.

Tentative Agenda

Day 1 – Tuesday, May 19
National CHD Advocacy Summit Program


Check-In begins at 11:00 followed by lunch and an afternoon program focused on building advocacy skills and shared priorities.

Afternoon Program Highlights

  • The current state of CHD policy and why this moment matters
  • Why we advocate together as one CHD community
  • Using your voice as an advocate
  • Storytelling training to craft a powerful 2–3 minute congressional story
  • Mock congressional meetings and role-play
  • State delegation breakouts to prepare for Hill meetings

Innovation & Policy Showcase
A science-fair–style showcase highlighting:

  • CHD innovations, companies, and research projects
  • How federal funding made these efforts possible
  • The policy gaps and actions still needed to accelerate progress

Evening Reception

  • Recognition of congressional leaders who have advanced CHD priorities
  • Networking and community building across the CHD ecosystem
Day 2 – Wednesday, May 20

Hill Day

  • Breakfast and final preparation
  • Congressional meetings on Capitol Hill with your state delegation, meetings end at 5:00 PM
  • Participants may depart that evening or stay an extra night

Hotel Information:

Hotel accommodations for the National CHD Advocacy Summit are available at the Courtyard Marriott Downtown/Convention Center. A limited room block has been reserved at a group rate of $299 per night, plus applicable taxes. To receive the group rate, reservations must be made by April 17, and rooms are available on a first-come, first-served basis. You may book your hotel room directly using the group rate link here.

A limited number of travel scholarships are also available to help cover hotel accommodations for participants with demonstrated need, subject to the availability of funds.

The National CHD Advocacy Summit is designed to elevate CHD as a national priority by equipping advocates with the tools, stories, and policy education needed to drive real change on Capitol Hill.

FAQ

Who should attend the National CHD Advocacy Summit?

Patients, family members, clinicians, researchers, advocates, nonprofit leaders, industry partners, and anyone interested in advancing federal policy for congenital heart disease and pediatric heart disease are encouraged to attend. No prior advocacy experience is required.

How do I book the hotel, and is there a group rate?

Yes. A hotel room block has been reserved at the Courtyard Marriott Downtown/Convention Center at a group rate of $299 per night, plus applicable taxes. You may also book your hotel room directly using the group rate link here. To receive the group rate, hotel reservations must be made by April 17, and availability is limited. A limited number of travel scholarships are also available to help cover hotel accommodations for participants with demonstrated need, subject to the availability of funds.

What does the registration fee include?

The registration fee covers costs associated with participation in the National CHD Advocacy Summit, including food during Summit program, congressional meeting scheduling services for participants, conference supplies, A/V support, and other conference-related expenses. Hotel accommodations are covered by participants.

Are scholarships or travel assistance available?

Yes. A limited number of travel and registration scholarships are available to support patients, families, advocates, and organizational leaders who may not otherwise be able to participate. To apply, complete the registration form and, when prompted, select “I would like to apply for a travel or registration scholarship.” Travel scholarships may be used to help cover costs associated with attending the National CHD Advocacy Summit, including transportation to and from Washington, D.C. (airfare, ground travel, or mileage), hotel accommodations, the registration fee, and limited meal expenses. Scholarship support is awarded based on need and the availability of funds.

What are the policy priorities or advocacy asks for Congress?

During the National CHD Advocacy Summit, participants will educate Members of Congress and staff about key federal policy issues affecting people living with congenital heart disease across the lifespan. Discussions will focus on gaps in insurance coverage, the need for sustained federal investment in CHD research, access to CHD-specific treatments and devices, and equitable access to heart transplantation for patients with complex congenital conditions. The goal of these conversations is to increase understanding of the lifelong impact of CHD and inform policymakers about opportunities to improve care, innovation, and outcomes through federal programs and policies.

Is this event accessible for people with medical or mobility needs?

Yes. The National CHD Advocacy Summit is designed to be accessible for individuals with medical or mobility needs. If you have specific accessibility requests, including the need for an ADA- or wheelchair-accessible hotel room, please indicate this on your registration form or contact info@everyhundredthheart.org, and our team will do our best to accommodate your needs.

Can children attend?

Parents and families are welcome to participate in the National CHD Advocacy Summit. To help ensure all attendees can fully engage in training sessions and be prepared for meetings with congressional offices during Hill Day, we encourage families to make alternate arrangements for children under age 12 whenever possible. If you have a special circumstance involving a child under 12, please contact info@everyhundredthheart.org so we can discuss your situation. Please note that childcare will not be provided.
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