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.
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
- Visit: www.ahelpinghandevents.com and log in or register for a new account.
- If it’s your first time visiting, you will be prompted to fill out a profile with your child(ren)’s information
- Go to your Event Registration tab and enter our GROUP ID NUMBER: CSNA
Chicago Marriott Lincolnshire Resort
10 Marriott Drive
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.
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.Learn more and sign up to volunteer
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.
X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED)
Dermelix Biotherapeutics, LLC in conjunction with Dr. Dorothy K. Grange, will be conducting a natural history study at the 2019 NFED Family Conference. The proposed study will enroll approximately 60 participants which will include male patients with a diagnosis of XLHED, female carriers of XLHED, as well as healthy volunteers. They will measure sweat production using minimally invasive technologies. Information on how to enroll coming soon!
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 firstname.lastname@example.org.