Date: July 11, 2019 - July 13, 2019

The National Foundation for Ectodermal Dysplasias (NFED) Family Conference is for everyone affected by ectodermal dysplasias and their loved ones. Come and spend three full days that will enhance your life!

Our caring staff and families will welcome you to the Windy City with open arms and understanding. You will quickly experience–not just know–that you are not alone. You will develop a support network of others affected by ectodermal dysplasias and learn from their practical tips and ideas.

Meet medical and dental experts and have the unique opportunity to talk with them one-on-one to ask questions. They are not just knowledgeable but compassionate. Discuss recommended treatment options and ways to cope with the emotional challenges of ectodermal dysplasias. Learn how to advocate for yourself, for your loved one and for the entire ectodermal dysplasias community.

You also can share your insights and story to inspire and help others. Stay in the know by hearing the latest research developments for your type of ectodermal dysplasia. While parents and adults are participating in sessions, kids and teens are kept busy with activities in Kays’ Kids Camp and Teen Program.

Register Now

Download Registration Brochure

Download Schedule-At-A-Glance

Kays’ Kids Camp and Teens Program

Sponsored by Louis J. and June E. Kay

Kays’ Kids Camp is available for children ages infant-12 years old. 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. Teens who register for the Teens Program will participate in off-site activities.

Pre-Register with Child Care Company

A Helping Hand will provide onsite event childcare. A Helping Hand is asking that everyone “Pre-Register” their children for the event, to ensure a smooth and time-saving check in process.
Please follow the instructions below to register your children with a Helping Hand. Do this AFTER you register for the Conference with the NFED:
  1. Visit: and log in or register for a new account.
  2. If it’s your first time visiting, you will be prompted to fill out a profile with your child(ren)’s information
  3. Go to your Event Registration tab and enter our GROUP ID NUMBER: CSNA
Event Pre-Registration for childcare will close at 11:59 p.m. on July 1, so please be sure to pre-register your children as soon as possible! If you have questions, please feel free to contact A Helping Hand directly.


Chicago Marriott Lincolnshire Resort
10 Marriott Drive
Lincolnshire, Illinois

Check out the beautiful resort where we will hold the 2019 Family Conference. The Lincolnshire Marriott Resort is in Lincolnshire, which is right outside of Chicago, Illinois.  To get the group rate, book your room by calling 847-634-0100 or by booking online.  Room block deadline is Tuesday, June 19. Room rate is $129 per night plus taxes.

How To Register

You can register online on or before Monday, June 24.


Includes Thursday dinner, Friday breakfast, lunch and dinner; Saturday breakfast and lunch; and Kays’ Kids Camp and Teens Program activities. Each paid registration will receive a Conference T-shirt.

Registration (Register before June 25)

Adult (18 and older) – $200

Children (birth–17) – $125

Late Registration (Register June 25 or later)

Adult (18 and older) – $275

Children (birth–17) – $200

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. There will be no refund allowed on or after July 1.

Portrait Studio

At the NFED, we always need high resolution, good quality photos of individuals affected by ectodermal dysplasias and their families. We especially need photos of teens and adults who are affected. We use these photos for nearly everything we do to tell our story and raise awareness.

Participation is completely voluntary. Time slots are limited so it will be first come, first serve.

Sign Up for Your Photo Shoot

Research Projects Taking Place

We have researchers conducting several research projects at this year’s Family Conference. You can learn more and sign up to volunteer for the project if you meet the criteria and are interested.

Ankylobpeharon-Ectodermal Defects-Cleft Lip and/or Palate Syndrome and Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome

Maranke Koster, PhD is needing additional skin biopsy samples for her project: Ongoing Research Into Skin Lesions In Patients Affected By AEC And EEC. Registration has closed.

Ectodermal Dysplasia: Type Unknown
We are launching a research study to help individuals get a diagnosis for the specific type of ectodermal dysplasia that affects them. Many individuals have a diagnosis of ectodermal dysplasia but do not know which of the 180+ types they have. Registration has closed.

X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED)
Dermelix has decided not to conduct the Natural History Study for x-linked hypohidrotic ectodermal dysplasia at this year’s Family Conference. We apologize for any inconvenience.

Bev Meier’s Golden Ticket Fund

Scholarships are available to help you attend the Family Conference. Funding is limited. Applications are now closed.

Join the Conversation

For updates and to connect with others who are going, you can also check out our 2019 Family Conference Facebook Event page.


We are seeking sponsorships for the Family Conference. View details.


Contact Kelley at the NFED at 618-566-2020 or

Register Now