Cheers to Mary Fete for 20 Years with the NFED!

The National Foundation for Ectodermal Dysplasias’ fearless leader is celebrating her 20th anniversary as part of the Foundation staff! Today, we celebrate all that Mary Fete, MSN, R.N., CCM, has accomplished and continues to do on behalf of the ectodermal dysplasias community worldwide. Mary officially joined the staff on February 27, 2002. The NFED’s founder,…

Helping Hands

Over the last two years, the NFED had to adapt to virtual volunteerism and fundraising in response to a global pandemic. See how you can get involved with these efforts.

Big News in the House for ELSA

Families affected by congenital anomalies are closer to getting health insurance benefits for the medical and health treatment they need. Our bill to mandate such payments took a big leap in the U.S. House of Representatives. Find out what the consensus calendar means and how you can help pass the Ensuring Lasting Smiles Act.

How Our NFED Family Came To Be

What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.

Awareness. Advocacy. Action.

February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on! In honor of Ectodermal Dysplasias Awareness Month (EDAM), please help us spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.

Why Genetic Testing is Critical in HED

If you or someone you love is affected by hypohidrotic ectodermal dysplasia (HED), a doctor or dentist may have made the clinical diagnosis based on symptoms. Or, maybe HED runs in your family and you “just know” that you or your child have it. So, why would you want to get genetic testing to confirm the diagnosis? There are many benefits. But, most importantly because the first treatment for the X-linked recessive type of HED is being studied in a clinical trial.

The Dickie Family’s Full Circle Moments with Ectodermal Dysplasia

John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.