National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

CALL US AT (618) 566-2020

We're here to help

Family Conference

Plan Now to Attend the 2016 Family Conference


Meet Us in St. LouisDon't Miss YOUR Event This Year!

Looking for a way to meet others who understand what it’s like to live affected by ectodermal dysplasias?  Have you ever wished that, for once, you could talk one-one-on to doctors and dentists who could educate you about the disorders instead of the other way around?  If so, then Family Conference is a great choice!

Over the course of three days, you will create a support network of families and staff who will be there for you when you return home. You will participate in interactive, educational sessions about diagnosis and treatment of the various symptoms of ectodermal dysplasias. You can also receive a FREE dental evaluation from a dentist who has been treating ectodermal dysplasias for years.

Download Registration Brochure



Doubletree by Hilton
St. Louis – Chesterfield Hotel & Conference Center
16625 Swingley Ridge Road
Chesterfield, Missouri
(Suburb of St. Louis)

Download Detailed Agenda


Check Out the New Sessions For This Year!

Music Therapy– Find out how music can soothe your soul and so much more.

The Adult Perspective– Adults affected by ectodermal dysplasias will network and learn from one another as they discuss issues they face.

Parenting Tips - Learn ways to help your children and teens understand their diagnosis.

Kids and Teen Time: Kids and teens will attend special sessions geared for their age.

35th Anniversary Celebration

Everyone is invited to attend the NFED’s 35th Anniversary Celebration Friday night. Dinner is included with your Conference registration. Take your children to Kays' Kids Camp and Teens Camp and enjoy the entertainment, live and silent auctions. A cash bar will be available. Learn more.


Special Room Rate: $125/night 
Book your room by calling 800-222-8733. We will have the online registration link available very soon.
Room Block deadline is July 1, 2016
Conference dates July 21, 22, 23, 2016

How to Register for Conference

Register online by Monday, June 27, 2016.


Adult (18 and older) - $185
Children (2 – 17) - $125
Less than 2 - Free
Thursday dinner, Friday breakfast, lunch and dinner; and Saturday breakfast and lunch are included in conference fee.

Apply for a Bev Meier Golden Ticket

Bev Meier’s Golden Ticket Fund

Scholarships are available to help attend the Family Conference. Funding is limited. Apply 

Learn more about the history of Bev Meier's Golden Ticket Fund.


Kays' Kids Camp and Teens Camp

Sponsored by Louis J. and June E. Kay
Kids’ Camp is available for children ages infant-12 years old.
Teen Program is for children 13–17 years old.
Both programs will include fun, age-appropriate entertainment, arts and crafts.


Contact Kelley Atchison at 618-566-2020 or email her.

Help Us Send a Kid to Camp


Thank You to This Year's Sponsors:

Louis J. and June E. Kay

Thank You, Joliet Woman's Club for being a Family Conference Sponsor


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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360