Things to Do in the Lou at Family Conference

If you are coming to the National Foundation for Ectodermal Dysplasias (NFED) this July— and who isn’t?!— you may want to add some extra days to your trip to see the sights in St. Louis. Make it a family vacation! The NFED office is located just across the Mississippi river in Fairview Heights, Illinois. Here are our tips for where to go and what to eat when you visit our hometown.

Esteemed Dentist Dedicated 20+ Years to the NFED

We are saddened to share the news that one of our beloved volunteer dentists has died. Read how Dr. Tom Vergo donated his time and talents to the Foundation for more than two decades.

Keeping You Safe and Healthy at the Family Conference

The excitement in the National Foundation for Ectodermal Dysplasias (NFED) office is beyond wild! Finally, after two long years of not holding a Family Conference, fighting the ongoing pandemic, and social distancing, we are finally going to reunite our family. It’s critical that we do everything we can to keep you healthy at Conference. Please read what our Scientific Advisory Council and staff are asking of all who attend.

8 Reasons to Attend the NFED Family Conference

Did you ever just want to go someplace where everyone accepts you? Then you need to go to the NFED Conference, says the Johnson family. They are “veterans” when it comes to attending Conferences. Having attended numerous events since 1998, they share their wisdom and ask you not why attend…but why not?

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.

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.

Let’s Celebrate 40 Years of NFED Success!

The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!