With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
Volunteering for the NFED gives you the opportunity to meet and help others with ectodermal dysplasias. But, you are the one who may benefit most. Learn more and sign up today.
Don’t miss the chance to be a part of the NFED’s largest fundraiser. And it’s all online!
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.
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.
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.
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.
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.