Find Hope, Answers, and Each Other
July 23 – 25, 2026
There is something life-changing about walking into a room where everyone “gets it.” We invite you to join us for three unforgettable days of connection and building lifelong friendships with people affected by ectodermal dysplasias and their families.
This isn’t just a conference. It’s a reminder that you are not alone in this journey.
📆 3 Full Days
Thursday afternoon through Saturday afternoon filled with connection and learning
💡 Expert Sessions
Join expert-led sessions to explore ectodermal dysplasia–related symptoms and discover the latest treatment options and care strategies
🛏️ Lodging
DoubleTree by Hilton in Chesterfield, Missouri with group rate of $159/night
👯 Kays’ Kids Camp & Teens Program
Childcare with fun activities and social opportunities for all children and teens included in registration
🎟️ Fees for the Family Conference
All registrations include Thursday’s anniversary dinner; Friday breakfast, lunch, and dinner; Saturday breakfast and lunch; and Kays’ Kids Camp and Teens Program activities. Register by May 31 to receive a Conference T-Shirt.
Early Registration
January 28 – April 28
$200 for Adults; $125 for Children (17 and under)
Regular Registration
April 29 – May 31
$225 for Adults; $125 for Children (17 and under)
Last Call Registration
June 1 – June 30
$400 for Adults; $125 for Children (17 and under)
💸 Scholarships
The Bev Meier’s Golden Ticket Scholarship Fund helps families attend the 2026 conference. These scholarships are awarded to cover registration fees and lodging. We hope to make the conference accessible to all families affected by ectodermal dysplasias. Funding is limited. Apply online by Friday, February 27.
🛏️ Lodging
A room block has been reserved at the DoubleTree by Hilton in Chesterfield, Missouri. The cost of lodging is not included in your conference registration fees. Our group rate is $159 per night plus taxes and fees. To secure the group rate, you must make your reservation by Friday, June 26.
Booking within the official hotel block helps us keep registration fees affordable, secure meeting space, and continue offering high-quality programming and events for our community.
By booking your stay directly through our link (instead of a third-party site), you will also have greater flexibility to modify your reservation directly with the hotel.
Important: Rooms and certain bed types are limited and available on a first-come, first-served basis. We strongly encourage attendees to reserve early to take advantage of these exclusive benefits.
Full conference agenda coming soon!
- Thursday, July 23, 11:30 a.m. — 10 p.m.
- Friday, July 24, 7 a.m. — 10 p.m.
- Saturday, July 25, 8 a.m. — 2 p.m.
*Schedule subject to change
👯 Kays’ Kids Camp and Teens Program
Sponsored by the Louis J. and June E. Kay Foundation
While you’re busy connecting and learning, your child will be off on their own exciting journey! Kays’ Kids Camp (ages infant – 8th grade) is fully included in your child’s registration, offering a world designed just for them to enjoy dedicated social time with others affected by ectodermal dysplasias or who have siblings with the condition. We partner with a professional childcare organization to provide expert, high-quality care so you can relax and focus on your sessions knowing your children are in the hands of experienced professionals who specialize in supporting families.
Our Teens Program (entering 9th through 12th grades in fall 2026) is where real-world connection meets total independence! It’s a chance to step away from the parents and hang out with young adult volunteers and peers who truly understand the journey. Through a mix of high-energy social sessions and “real talk” discussions led by specialists and inspiring young adult mentors, teens will find a community that “gets it.” They’ll have the opportunity to share their stories, find their voice, and build friendships that go way beyond the conference.
📋 What to Expect at Family Conference!
Get ready for another unforgettable experience where trusted guidance meets the heart of our community. This year is more than just a conference, it’s a milestone! You will enjoy (click on each arrow to learn more):
🎉 Our 45th Anniversary Celebration
Join us Thursday evening as we celebrate 45 incredible years of the NFED. This special event will honor our journey, reflecting on the breakthroughs we’ve achieved together and looking ahead to the exciting future of ectodermal dysplasias care and research. And yes… we’re taking it way back with an ’80s–themed celebration! Get ready to rock those bold patterns, neon colors, and parachute pants! Whether you’re “totally ’80s” or just coming as you are, we can’t wait to celebrate with you!
💬 Informal Social Gatherings
When the sessions end, the connection continues! On Thursday and Friday nights, join friends after dinner for informal social gatherings. It’s the perfect time to relax, unwind, and keep the conversations going with new and old friends in a casual, laid-back setting.
👋 The Young Adult Crowd (ages 18-30)
The conference experience is even more meaningful when shared with people in your own age group. We’ve designed exclusive events specifically for our young adult community. Come for the connection, stay for the memories, and leave with a group of new friends who truly understand your world.
🦷 Dental Evaluations & Ask the Experts Sessions
Our Ask the Expert sessions are a wonderful way to receive focused, 1:1 guidance from our trusted advisors. These brief, 10-15 minute conversations are designed to answer your specific questions and provide you with valuable information to share with your own medical team back home. While these sessions are incredibly helpful for gaining new insights, please remember they are intended for guidance and information-sharing rather than a replacement for the ongoing care of your personal doctors.
🍴 Shared Meals
Enjoy six delicious, buffet-style meals included with your registration, starting with dinner on Thursday through lunch on Saturday. While we offer a variety of options to meet dietary requests, please understand that we cannot guarantee a completely allergen-free environment due to the nature of the kitchen. We are committed to providing a great dining experience for everyone, with selections available at every meal to accommodate your needs.
🚙 Transportation Information
Access available local transportation options to and from the St. Louis Lambert (STL) International Airport, including MetroLink light rail, ride app, taxi, and off-site car rental.
⚠️ Disclaimer
The NFED Family Conference is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine proper treatment options. Opinions shared in the sessions do not necessarily reflect those of the NFED. Conference topics are subject to change.
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.
✖️ Registration Cancellation Policy
If you register but are unable to attend the Family Conference, the NFED will refund your total conference registration fees, less a $30 administration fee. No refunds will be allowed after June 30. Please email Kelley at kelley@nfed.org with any questions.
