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.


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 hotel site to be announced soon.


We are finalizing details for a block of rooms at the hotel in Washington D.C. where training will take place. A link to book your room will be provided soon. Check back for details.


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.


We are offering a limited number of scholarships to help offset families’ travel expenses. Register for the scholarship using the form below by April 1. Families who receive scholarship assistance must attend the training on July 17th and the full advocacy day on the 18th.

Register Now