We invite our ectodermal dysplasias community to join us for our second Ectodermal Dysplasias Advocacy Day on Capitol Hill on Wednesday, July 18, 2018 in Washington D.C. Our goal is to meet with legislators and ask them to support a Senate Bill that will be announced soon by Senator Tammy Baldwin of Wisconsin by voting yes. We do ask that you register all members of your family who will participate using the form below.

Download Advocacy Day Schedule

Training

Our experts will lead a 3-hour training session on Tuesday, July 17. They will cover key messages, what to expect, logistical information and other tips to help make your day successful. Training will take place at a the Kellogg Conference Hotel, 800 Florida Ave NE in Washington D.C.

Download Training Day Schedule

Preparing for Advocacy Day

You can learn more about this year’s Advocacy Day on Capitol Hill by watching our training webinar or reading through the slide deck from the webinar. Volunteers from our Family-Driven Advocacy Committee discuss what you can expect, how to prepare, items to bring, kids advocacy, the legislative asks you will make and what resources the NFED has available.

Watch Training Webinar Read Training Webinar Slide Deck

We also have put together some resources to help you. Find tips and ideas for preparing for an advocacy meeting. You can find sample letters from families in our advocacy resources. You can use these letter to help you write your story and letter to bring with you.

Facebook Event

We will also be posting information about Advocacy Day in the Facebook event. Be sure to check it out and respond that you are attending. You can connect with other advocates who will attend.

Check out Advocacy Day Facebook Event

Hotel

We have secured a block of rooms at the Kellogg Conference Hotel, 800 Florida Ave NE, in Washington D.C. To make your overnight guest room reservation at $149 per night based on availability, please call 202-651-6000 and ask for the NFED room block or you can make your reservation online.  There is a limited number of rooms available at this rate. Please book your reservations as soon as possible, and no later than Wednesday, June  27, 2018.

Costs

Participation in Ectodermal Dysplasias Advocacy Day is free. We will provide dinner Tuesday night and breakfast on Wednesday. You are responsible for costs related to travel and lodging.

Scholarships

The application for scholarship process has now closed.

Register Now