Girls in sunglasses at the 2019 Family Conference in Chicago
Date: July 14, 2022 - July 16, 2022

The National Foundation for Ectodermal Dysplasias (NFED) Family Conference welcomes everyone affected by ectodermal dysplasias and their loved ones. Join us for three days of learning, growing and bonding over life with ectodermal dysplasias!

Save the Dates: July 14-16, 2022

The 2022 Family Conference kicks off on Thursday, July 14 and wraps up on Saturday, July 16, 2022. Both in-person and virtual attendance will be available, with in-person events taking place at the DoubleTree by Hilton Hotel in Chesterfield, Missouri. 

Online registration will open in early January. We hope you can make it!

Conference Details

A lot has happened since our last Family Conference in 2019. We’re overjoyed to be able to celebrate the 40th anniversary (!!!) of NFED this year with our strong, supportive and beautiful community!

While we enjoyed learning with you through the 2021 Conference from Your Couch Webinar Series, we’re thrilled to be able to host both in-person and virtual events at the 2022 Family Conference.

  • A Celebration Dinner
  • Family Pool Party
  • Kays’ Kids and Teens Camp
  • General sessions on topics like dermatology concerns, ENT issues and genetics
  • Syndrome-specific group sessions
  • Updates on the latest research developments

Family Conference events are subject to change based on local and CDC guidelines. Our number one priority is and always will be the safety of you and your family.

Photo shoot at the 2019 Family Conference

Find your NFED family at our Family Conference.

We’ve designed the conference as a way for families and individuals affected by ectodermal dysplasias to develop a support network of others affected by similar conditions. Our caring staff and volunteers roll out the welcome mat for new attendees, and familiar faces return for a big, happy family reunion.

You’ll also be able to meet with medical and dental experts, talk with them one-on-one, and ask questions. You can use these unique opportunities to discuss recommended treatment options and ways to cope with the emotional challenges of ectodermal dysplasias.

At the Family Conference, you’ll learn how to advocate for yourself, for your loved ones, and for the entire ectodermal dysplasias community.

Kays’ Kids Camp And Teens Program

Kays’ Kids Camp is available for children ages infant-12 years old. The Teens Program is for children 13–17 years old. Both programs include fun, age-appropriate workshops, entertainment, arts and crafts, and social time with others who are affected by ectodermal dysplasias or who have siblings that are.

Many thanks to the Louis J. and June E. Kay Foundation for sponsoring these programs!

Dancing on stage at Kays' Kids Camp in 2019

Bev Meier’s Golden Ticket Fund

Apply for a golden ticket to attend the 2022 Family Conference! Bev Meier’s Golden Ticket Scholarships will be available again in 2022, but funding is limited. More information and the application deadline will be shared when online registration opens.


Interested in sponsoring the 2022 Family Conference? Please reach out to Tim Mickelson at for the details and open opportunities.