2023 NFED Advocacy Day on the Hill


We will be heading to Washington, D.C. September 18 – 19 to advocate for the Ensuring Lasting Smiles Act (ELSA). This bipartisan and bicameral federal legislation would require a group health plan, and a health insurance issuer offering group or individual health insurance coverage, to provide coverage for outpatient and inpatient items and services related to the diagnosis and treatment of a congenital anomaly or birth defect.

IMPORTANT UPDATE! We have reached our maximum capacity for Advocacy Day on Capitol Hill, and REGISTRATION IS NOW CLOSED. Due to space limitations, we will NOT be able to accept any on-site registration. We are so grateful for everyone’s enthusiasm for this important event and your continued support for ELSA – Thank you!

Since ELSA was first introduced in the 116th Congress, it has received incredible bipartisan support in the U.S. House of Representatives and the U.S. Senate. In the 117th Congress, this bill gained strong support from 62 U.S. Senate cosponsors, 317 U.S. House cosponsors, and passed in the U.S. House of Representatives with a 310-110 vote.

In January of 2023, the 118th Congress took office, which means ELSA must be reintroduced in both the U.S. House and Senate, and we must begin our advocacy efforts all over.

Advocacy Day on the Hill events are so important because it allows individuals and families who would benefit from the passage of ELSA to share their personal stories with their legislators and/or their staff. Your voice is the most powerful tool we have in getting ELSA passed into law.


Legislators need to hear the stories of constituents from their district, so we need individuals from all 50 states to be represented on the Hill this September. Individuals representing congenital anomalies that would benefit from the passage of ELSA, as well as students, health care providers, researchers, etc., are welcome to join us to share how ELSA would make a positive impact.

ELSA Advocacy Day on Capitol Hill

Monday, September 18 – Tuesday, September 19, 2023

Sheraton Pentagon City Hotel
Arlington, VA

Registration Fee: $25/individual and $50/family (non-refundable)

Registration includes meals, t-shirt, advocacy training, legislative meeting scheduling, transportation to Capitol Hill, leave-behind materials and tote bag (1 per family).


ADVOCACY RESOURCES: Check out our Advocacy Resources page for helpful information and resources to help you share your story and advocate to your legislators.

IMPORTANT DATES & TIMES: To help in planning your schedule and travel arrangements, please see the following schedules for important dates and times.

Download September 18 Schedule

Download September 19 Schedule

LODGING: We have secured a room block at the Sheraton Pentagon City Hotel in Arlington, VA. Room rates are $189/night plus taxes and fees and can be reserved online or by calling 1-800-325-3535 and asking for the National Foundation for Ectodermal Dysplasias Day on the Hill room block. Make your reservation by Monday, August 28 to receive room block pricing.

TRAVEL: There are three airports that service the D.C. area for participants traveling by plane.

  • Ronald Reagan Washington National Airport (DCA) is located 5 miles from the hotel.  On-airport car rental is available or participants can take a taxi or app-based (Lyft, Uber, etc.) ride services to the hotel. OR the Sheraton provides a free shuttle from this airport only, with departures every 30 minutes from 6 – 9:00 a.m. and hourly, at the top of the hour, from 9:00 a.m. – 11:00 p.m. (Use Door 4 and/or Door 7 and look for the sign on the curb that reads, “Hotel Shuttle Pick up.”)
  • Washington Dulles International Airport (IAD) is located 25 miles from the hotel. On-airport car rental is available or participants can take a taxi or app-based (Lyft, Uber, etc.) ride services to the hotel.
  • Baltimore/Washington International Thurgood Marshall Airport (BWI) is located 45 miles from the hotel. On-airport car rental is available or participants can take a taxi or app-based (Lyft, Uber, etc.) ride services to the hotel.

The Sheraton also provides free shuttle pick up at the Pentagon City Mall Metro Station from 9:30 a.m. – 9:45 p.m. with departures every hour at 30 minutes after the hour.

ADVOCATE TRAINING: We will host a brief virtual training on September 12 at 8:30 p.m. EDT and an in-person training session for all participating advocates the night before Day on the Hill, Monday, September 18, at the Sheraton Pentagon City Hotel. Training session details will be shared closer to the event.

TRANSPORTATION TO THE HILL: We will provide transportation for all advocates from the hotel to Capitol Hill. When we arrive, you may need to walk between buildings for your meetings.

ATTIRE: There will be a lot of walking between buildings on Capitol Hill. Advocates should wear sneakers or comfortable shoes and casual attire. We will provide a t-shirt to all registered and attending advocates.

ADVOCACY DAY ACTIVITIES: Meetings with your legislators will be scheduled ahead of time, and you will be provided with the meeting time and place. All you have to do is show up and share your story.

We will also take a group photo at the Capitol. Specifics about the day’s schedule and invited speakers will be shared with registrants closer to the event.

Organizing and promoting an event like this takes tremendous resources, and we can’t do it without you. You can help by becoming a Day on the Hill Sponsor!

Event sponsors will receive the following benefits:

$150 – $9,999

  • Name or logo on the NFED Website.
  • Recognized in NFED e-newsletter.
  • Recognition in NFED social media post.

$10,000 – $24,999

  • All benefits listed above.
  • Name or logo on Advocacy Day t-shirts* that advocates will wear to Capitol Hill during their legislative meetings.


  • All benefits listed above.
  • Recognition during the welcome remarks of the in-person training on Monday, September 18. For those in attendance, the opportunity to introduce your organization and share why you are an event sponsor.

*To receive full recognition and be included on the event t-shirts, sponsorship commitments and logos must be received by Friday, August 11, 2023.