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.
Seventy-Five Strong
We thank our hard-working volunteers for the hours they so generously dedicated to the 2019 NFED Family Conference. Without them, this event would not be possible.
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.
A Wild Yet Silent Thunderstorm
Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.
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.
Prevent and Treat Nasal Crusting with Ectodermal Dysplasias
Do you or your child have trouble breathing because of “nasal rocks” or “concretions” (aka big boogers)? Find out what causes them and how you can best prevent and treat them.