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

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Family Conference

Save the Date

Family Conference Is Now Full

We have a good problem! Our Family Conference is FULL. We have 435 people registered which is a record. Unfortunately, we cannot accommodate any more attendees due to conference space limitations. We are sorry that we cannot register any more people for Family Conference. Thank you for your understanding!


Come Home to Connect With Your NFED Family! 

For 33 years, families affected by ectodermal dysplasias have been gathering each summer to learn from doctors, dentists and each other. It’s our own version of a Homecoming! 

If you have been to just one Conference or 10, we invite you to attend Homecoming 2014 to 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 need would love to have your help with workshops, panels and more.

Download and Print Registration BrochureIf you have never been, consider the NFED Family Conference a place where you can lean on others who are facing similar challenges and a place to find support and understanding.

What’s on the agenda?

In addition to the exclusive opportunity to participate in one-on-one consultations with medical or dental experts, here’s what’s on the agenda. All workshops feature a question and answer period and are very casual, allowing the opportunity to share and learn from each other.

  • Syndrome-specific workshops focused on your type of ectodermal dysplasia, moderated by a knowledgeable physician
  • Understanding the complicated world of genetics
  • Research updates and how it will impact you
  • Group networking workshops focused specifically for women, men, teens, grandparents, and young adults
  • Specific care workshops – teeth, eyes, ear, nose, throat, pediatrics, feeding/nutrition, skin, hair, and nails
  • Communications workshops – dealing with schools, bullying concerns and teenage/young adult issues

Download Detailed Schedule

Conference Site:  The DoubleTree by Hilton Columbus Worthington is now booked.

We have contracted rooms with another hotel since the Doubletree is booked.  The room rate is $114 a night.

Hotel Information

Sheraton Suites

201 Hutchinson Ave

Columbus, OH

To make reservations call  614-436-0004 and ask for reservations or online at

 Questions?  please call Amy Rush at the NFED at 618-566-2020.


NEW!  XLHED Women's Forum


Wednesday, July 23

9 a.m. - 12 p.m.

Edimer Pharmaceuticals will host a forum dedicated to women who are carriers of X-linked hypohidrotic ectodermal dysplasia (XLHED).  You will learn from experts while meeting with other women who share your experience as a carrier of XLHED. Learn more.

NEW! Let the Celebration Continue

Saturday, July 26th, 6 p.m

You are invited to the Saturday Night Celebration Dinner. Please join us Saturday evening for dinner and fun as our family reunion continues. We will celebrate our NFED family and honor Straumann for their 10 years of philanthropic support. Child care will be provided.

Dinner, Cocktails and Fun

Silent Auction & Mystery Bags

Volunteers Wanted!

If you are coming to the Family Conference, would you like to help us at the event? If you want to volunteer to help, click on this link and sign-up for the activity and shift you would like to work. We appreciate your help!

Do You Need Help Getting to Conference?

Apply for a Family Conference Scholarship

The NFED offers scholarships to families who need financial assistance to attend the conference.  Scholarships can include waived registration fees and/or hotel stay reimbursement. Preference will be given to families who have not previously attended a conference, but all families needing assistance are encouraged to apply. To be eligible, fill out and return the application to the NFED office by Friday, April 11, 2014.  Families will receive an acknowledgement letter by Wednesday, April 30, 2014, stating if they received a scholarship and if so, the awarded amount.

Cover Your Registration Fees by Selling Ads in the Family Conference Yearbook

  • $1,000 in ad sales = 1 Adult Registration
  • $500 in ad sales = 1 Child Registration (True Registration Value $362 per person)

The 2014 National Family Conference Yearbook will be a full-color piece and will include the event program, note pages, photos from each of the last 32 conferences, stories from family members, and will highlight various milestones in NFED history. Each adult will receive a complimentary copy with his/her registration.

Download flyer with more information. 

Learn How You Can Help


We Thank Our Sponsors


Louis J. and June E. Kay

The Hubbard Broadcasting Foundation

Joliet Woman's Club




"Get Roped In" 2013 National Family Conference

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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.
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