Stand Together NFED Advocacy Conference 2024

Date: July 7, 2024 - July 9, 2024

Be Part of Something Truly Special at NFED’s Stand Together Advocacy Conference

Don’t let this opportunity pass you by!

Join us in standing together and making a difference for those living with ectodermal dysplasia and other congenital anomalies. It’s not just a conference; it’s a reunion with old friends and a warm welcome to newcomers, all becoming part of the NFED family.

Immerse yourself in three unforgettable days in Washington, D.C., filled with engaging activities; insightful learning sessions, and a powerful day on Capitol Hill where your voice will be heard. Whether you’re an experienced advocate or just starting out, advocates of all ages and backgrounds are welcome and encouraged to attend. Share your experiences, advocate for what matters to you, and help shape a brighter future.

Read How This Conference is Unique

ORGANIZATIONS & PARTNERS MAKING A DIFFERENCE

WHEN
July 7- July 9, 2024

WHERE
Grand Hyatt Washington
1000 H Street, N.W.
Washington, D.C. 20001

PLAN AHEAD

STEP 1

REGISTER

Registration for the Stand Together NFED Advocacy Conference has closed.

Your fee includes Sunday hors-d’oeuvres and activity; Monday breakfast, lunch and dinner; Tuesday breakfast and dinner; advocacy training, and Kays’ Kids Camp and Teen Program activities on Monday. Each paid registration will receive a Stand Together Advocacy Conference T-shirt, leave-behind materials and tote bag (1 per family). Legislative meeting scheduling and transportation to and from Capitol Hill on Tuesday.

View Conference Agenda

STEP 2

HOTEL STAY

Stay with the group at the Grand Hyatt Washington!
Room block deadline is Friday, June 7, 2024.

Room rate is $239/night plus taxes and fees for single and double occupancy, $264 for triple occupancy and $289 for quad occupancy.

BOOK YOUR ROOM

FAQs

ADVOCATE TRAINING

We will host a brief virtual training on June 25 at 8:30 p.m. EDT and an in-person training session for all advocates the night before Day on the Hill, Monday, July 8, at the Grand Hyatt Washington. Training session details will be shared closer to the event.

TRAVEL

There are three airports that service the D.C. area for participants traveling by plane: Ronald Reagan Washington National Airport (DCA), Washington Dulles International Airport (IAD), and Baltimore/Washington International Thurgood Marshall Airport (BWI).

ADVOCACY DAY ATTIRE

There will be a lot of walking between the Senate and House 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.

TRANSPORTATION TO AND FROM CAPITOL HILL

We will provide transportation for all advocates from the hotel to Capitol Hill and back to the hotel. When we arrive, you may need to walk between buildings for your meetings.

ADVOCACY DAY MEETINGS

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.

ADVOCACY RESOURCES

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

WE NEED YOUR VOICE

OUR DAY ON THE HILL

We will be advocating 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.

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 July. Individuals representing congenital anomalies who 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.

JOIN OUR ELSA ADVOCATES GROUP