2019 Advocacy Day on Capitol Hill Logo

The National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day on Capitol Hill is a two-day event for individuals affected by ectodermal dysplasias and their loved ones from all over the United States to gather in Washington D.C. and raise their voices.

Advocates affected by other congenital anomalies are welcome to attend, too! We will advocate for health benefits for the medical and dental treatments of ectodermal dysplasias and all congenital anomalies.

You and your family are invited to join us on Capitol Hill in Washington D.C. for our third Ectodermal Dysplasias Advocacy Day on Wednesday, July 17, 2019. Our goal is to educate legislators and ask them to co-sponsor the Ensuring Lasting Smiles Act (ELSA). Meeting in person gives you the opportunity to share your story and create a relationship with your Senators and Representative.


While this event is free, we need you to register all individuals in your family who are attending Advocacy Day by completing the form below. This helps us schedule your meetings, provide training materials and know how many buses to rent for transportation. Please register only if you know for certain you can attend.

Day One – Training

Tuesday, July 16, 2019
1 p.m. – Registration
2 p.m. – 7 p.m. – Training

You will receive training on Tuesday, July 16th at the Kellogg Conference Hotel at Gallaudet University to prepare for Advocacy Day. All advocates must attend. We’ll tell you everything you will need to know about educating your legislators, how to communicate your message and what to expect.

Day Two – Call on Congress

Wednesday, July 17, 2019
8 a.m. – 4:30 p.m.

On the second day, you and other families from your state will meet with your senators and representative or their staff. We will provide transportation from the Kellogg Conference Hotel to Capitol Hill in the morning. Our team will handle all of the meeting scheduling and logistics for you.

Travel Logistics

NFED Advocacy Day on Capitol Hill Room Block

We have reserved a block of rooms at the Kellogg Conference Hotel at Gallaudet University. Call 202-651-6000 to book your room. Be sure and mention the National Foundation for Ectodermal Dysplasias. There is a limited number of rooms available at this rate please book your reservations as soon as possible, and no later than Monday, June 17, 2019 .

To make your hotel reservation, call 202-651-6000 and ask for the National Foundation for Ectodermal Dyspasias  or you can click on this link and make your reservation online.

Kellogg Conference Hotel at Gallaudet University is offering a special group rate of $149 plus taxes per night. Overnight parking – $30 per night. $10 per night facility fee. Reduced breakfast rate in Bistro at Kellogg: Adult $13.95; Children 10 and under – $6 with paying adult

Travel Stipends

We are pleased to offer a number of financial stipends to help advocates travel to Washington D.C. to participate in Advocacy Day. You can apply by completing the form below.

To help get more advocates to the Hill in 2019 to raise their voices to get ELSA passed, make a donation!

Check Out the 2018 NFED Advocacy Day

Last year, we had 46 families from 36 states join us on Capitol Hill in Washington D.C. for our second Ectodermal Dysplasias Advocacy Day. Combined they had over 120 meetings. Our virtual advocates at home also took action by emailing their members of Congress. Check out our recap. See Photos

Watch Videos

NFED Advocacy Day on Capitol Hill 2018

The Walkers Go To Washington

Latham Advocates to Get Teeth