You can donate to the NFED through the United Way or the Combined Federal Campaign. Learn how to double your donation through a matching gift.
Teaming Up with Other Patient Advocates on the Hill
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.
Testing a Non-invasive Way to Diagnose XLHED In Utero
Dr. Angus Clark is investigating a new, noninvasive way to diagnose x-linked hypohidrotic ectodermal dysplasia in utero. His findings could help facilitate the upcoming clinical trial for treatment. We are proud to fund this work.
Keep on Trucking
At 45, Erica Merriweather has spent a lifetime being treating differently, even bullied, because her teeth are different due to ectodermal dysplasia. Now, she’s fighting to get treatment.
Made With Love
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.
Why Volunteering Can Change Your Life
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.
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.