For 40 years, the National Foundation for Ectodermal Dysplasias (NFED) has been the recognized leader and trusted source for the ectodermal dysplasias community around the world. This year, we are celebrating four decades of impact and invite you to join us!

The Foundation began on December 24, 1981 when 12 brave and determined families envisioned a better future, one filled with better information, resources and connections.

The theme for our anniversary is Deep Roots, Strong Branches. Our journey has been long, required tireless dedication and resulted in continuous growth of our life-changing services. Thank you for making our first 40 years amazing!

Thank You for Making our 40th Anniversary a Success!

Check out our 40th Anniversary Celebration Book below for celebration highlights, sponsors and more!

How We Are Celebrating

We will be increasing support services for our families, providing additional financial support for treatment and spearheading and funding more research projects than ever before. Families and friends attending the 2022 Family Conference in St. Louis will enjoy our 40th Anniversary Celebration on Friday, July 15.

Our Impact

Our small-but-mighty organization has had great success by staying true to our founding mission to empower and connect people touched by ectodermal dysplasias through education, support and research. Walk down memory lane with us as we highlight key accomplishments in the Foundation’s history. It’s an extraordinary journey, from our humble beginnings at NFED Founder, Mary K. Richter’s, farmhouse kitchen table to the development of a potential treatment for the most common type of ectodermal dysplasia.

Explore Accomplishments

Deep Roots – Our Stories

I am extremely grateful to the NFED for being the family that they are and that they have been to our entire family….And that’s why we say it’s not just a Foundation. It’s a family!

Virginia Higgins, NFED founding family member, volunteer and advocate

With 40 years of service, incredible stories abound! Reminisce with families, staff and other friends as they share how the Foundation evolved and impacted their life.