Persistence is the name of the game for getting a bill passed in Congress. NFED leadership was in D.C. last week speaking up for issues important to our families.
Marching On After Diagnosis
Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.
Fighting for Teeth
ELSA advocates took action at home and on Capitol Hill on July 17 to ask Congress for insurance benefits for their medically necessary dental care.
What Happened at the 2019 Family Conference
Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, aha moments, laughter, hugs, and even tears.
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.
Meet Your Legislators Close to Home
Beth Pond has been advocating for ectodermal dysplasias health benefits for 23 years. She shares what you can do in your home state to create change.
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.