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


Register for Family Conference


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-on-one to doctors and dentists who could educate you about the disorder instead of the other way around?  If so, then the 2015 NFED Family Conference is a great choice!

Over the course of three days in beautiful Colorado Springs, Colorado, 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.

If you have children, they will be having fun in Kays’ Kids Camp or Teens Camp with their own activities and games. They will enjoy meeting other kids who look more like their cousins than strangers!

If you have been to just one Conference or 10, Family Conference is a fantastic opportunity for you to share your experiences and offer support, insight and advice to our first-time attendees. You will also get to reconnect with friends you made at previous conferences. We also would love to have your help with workshops, panels and more. 

When we support each other, we are Moving Mountains Together!

Download and/or Print Family Conference Brochure

You must register for the conference online no later than June 10, 2015.  Upon receipt of your completed registration, the NFED will send you a confirmation packet verifying your registration.

Download Full Agenda

Download Parent Packet for Tots on the Spot for Kays' Kids Camp


Location and Accomodations

Cheyenne Mountain Resort
Cheyenne Mountain Resort
3225 Broadmoor Valley Road
Colorado Springs, CO 80906
Phone - 800-428-8886
The conference will be held at the picturesque Cheyenne Mountain Resort.  The Resort’s on-site recreational facilities include an18-hole Pete Dye championship golf course, 18 tennis courts (six indoor), three heated swimming pools (one indoor), two Jacuzzis, squash and racquetball courts, and a fully-equipped fitness center, massage and spa facilities, and mountain bike rentals. Water sports on the 35-acre recreational lake include sailing, paddleboats and fishing.


Registration Fees

The Registration fee includes your sleeping accommodations (and all taxes, services charges and the facility fee) for Thursday, July 23rd and Friday, July 24th; dinner on Thursday evening; breakfast, lunch and dinner on Friday; and breakfast and lunch on Saturday; all conference materials; clinical consults; workshops; general sessions and all Kids’ Camp activities.  All family members staying at the Cheyenne Mountain Resort and participating in any conference activities must register for the conference.

Single Occupancy Adult - $628
Double Occupancy Adult (includes 2 adults) - $880
Additional Child (birth -17) - $100
Additional Adult (age 18 and up) - $250
When the NFED receives your registration, we will make your reservations for your sleeping accommodations (based on your registration) for the nights of Thursday, July 23 and Friday, July 24.  If you wish to arrive early or stay additional nights you will need to book them by calling the Cheyenne Mountain Resort directly at 800-428-8886.  Please tell them that you have already registered for the NFED conference through the NFED.  Room reservations before or after July 23-24 are $189 per night for single or double rooms.

If you would like to attend the conference but will not be staying at the Cheyenne Mountain Resort, the registration fee is $250 for adults (age 18 and up) and $100 for children (birth to age 17).


Cancellations and refund requests must be made to the NFED by June 15, 2015. No refunds will be issued after June 15, 2015.

Family Conference Scholarships

A limited number of scholarships are available. Apply online by Friday, April 17, 2015.



See Family Conference 2014 Photos

Site Copyright 2010 by National Foundation for Ectodermal Dysplasias. All Rights Reserved. St. Louis web design by Insite Advice.
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