Meet the Kelso’s & Huxman’s! Who are they???

The Kelso and Huxman families met in 2006 at the NFED Family Conference in St. Louis. Both have children affected by EEC Syndrome and they found an instant connection with one another. Before that conference had ended, they were finishing each other’s sentences; their children were referring to themselves as “cousins”; and they were making…

Important: HED participants: Informed Consent Document & Medical Questionnaire

Attention HED Families participating in Research! There will be a meeting to inform participants about this research and answer any questions you may have on Thursday 21 July, 2011 from 5:30PM-6:30PM in Ballroom West! Please read the following carefully before you come to the National Family Conference if you are participating in the Edimer Pharmaceuticals,…

Childcare @ National Family Conference 2011: Important: Consent & Release Form

Corporate Kids Events Shortly, you will receive in the mail your National Family Conference Confirmation letter with additional information sheets to be filled out and e-mailed to Malinda@nfed.org or faxed to our office 618-566-4718 or bring the form filled out with you to the Conference! Below is one of these forms that need to be…

30th Anniversary Gala Wednesday 20 July 2011: Important Update: Transportation & Child care

You will receive your Family Conference Confirmation package  shortly in the mail with additional information.  One of them being the following: 30th Anniversary Gala Transportation & Childcare Update: Wednesday, July 20, 2011 Transportation The NFED will provide free transportation via coach bus from the National Family Conference site (the Hilton Garden Inn in O’Fallon, IL)…

Watch this video on the NFED National Family Conference!!

Hopefully this inspires you to attend this year’s conference at the Hilton Garden Inn in O’Fallon, Illinois! It will change your life. Watch and see why. http://www.youtube.com/user/EctodermalDysplasias?feature=mhum#p/a/u/0/Qok2STHX-T0 Since 1981, the National Foundation for Ectodermal Dysplasias has hosted an annual conference where individuals affected by ectodermal dysplasias and their families gather to receive information and support….