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!

Join Us July 14-16, 2022

The 2022 Family Conference kicks off on Thursday, July 14 and wraps up on Saturday, July 16, 2022. The event will take place at the DoubleTree by Hilton Hotel in Chesterfield, Missouri. 

Registration for the 2022 Family Conference has closed. Please email Kelley at with any questions.

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!


Includes Thursday dinner; Friday breakfast, lunch and dinner; Saturday breakfast and lunch; Kays’ Kids Camp and Teens Program activities; and an invitation to the NFED Gala and 40th Anniversary Celebration on Friday evening. Each paid registration will receive a conference T-shirt.

Early Registration (before May 25)

Adult (18 and older) – $185
Children (birth – 17) – $125

Late Registration (after May 24)

Adult (18 and older) – $260
Children (birth – 17) – $200


A room block has been reserved at the DoubleTree by Hilton in Chesterfield, MO. The cost of lodging is not included in your conference registration fees. Our group rate is $146 plus taxes per night. To secure the group rate, you must make your reservation by Tuesday, June 14, 2022.

Book your room online or by calling 800-315-5459 (ask for the NFED 2022 Family Conference block).


Apply for a golden ticket to attend the 2022 Family Conference! Bev Meier’s Golden Ticket Scholarships will be available again in 2022 to help those with financial need attend the conference. Apply online at time of registration. *Please note that we have extended the deadline to apply to Tuesday, April 1, 2022. However, funding is limited so we encourage you to apply soon!


We are thrilled to be able to host an in-person event again.* The 2022 Family Conference will bring our NFED family back together where we can enjoy:

  • A 40th Anniversary Celebration Gala and 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

View Conference Schedule-at-a-Glance

*Family Conference events are subject to change based on local and CDC guidelines. Our first priority is always the health and safety of our families. Because of that, we are asking everyone to first consider the safety of attending an event like this for your family and discuss it with your doctor, if you have concerns.

To help protect the most vulnerable attendees, such as children who are not yet eligible for a COVID-19 vaccine, we are requesting (not mandating) that all attendees wear a mask and strongly recommending that all persons eligible for the COVID-19 vaccination and boosters receive them prior to attendance.

Please review Keeping You Safe and Healthy at Family Conference and a statement by our Scientific Advisory Council to learn more about what we plan to do to protect attendees from exposure to COVID at the conference.

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.

Dancing on stage at Kays' Kids Camp in 2019

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!


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