June 24, 2020 was an extraordinary day for the Ensuring Lasting Smiles Act (ELSA). It was our largest turnout ever! Hear from Congress and find out what’s next for this key legislation.
How to Tell Your Advocacy Story
Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.
What Makes A Child With Ectodermal Dysplasia Forever Strong?
Growing up isn’t easy, especially if you are a child affected by ectodermal dysplasia.
How Virtual Advocacy Day Works
Find out how easy it is to participate in a Virtual Advocacy Day! We’ll you through the process of how you can raise your voice and help move the Ensuring Lasting Smiles Act through Congress.
Family Conference Canceled Due to Coronavirus
To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.
Share Your Story with the Press
Sharing stories with local press is a powerful tool to raise awareness about ectodermal dysplasias and the challenges many face getting the health insurance coverage they need. Christine Gottschalk details how families and individuals can raise awareness for the Ensuing Lasting Smiles Act through the press.
What to Expect When You Visit Your Legislator at Day on the Hill
Are you attending NFED Advocacy Day on Capitol Hill? Veteran advocate Karl Nelsen walks you through what to expect when you meet with your legislator.
Advocacy from the Classroom to Capitol Hill
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.