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.


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. At the National Family Conference, experts provide medical and dental presentations to explain the various symptoms and how to best treat them. Special educational and social programs for the affected children and their siblings are an integral part of the conference. Participants share personal connections with others who understand and exchange ideas, support and advice. Since 2001, the National Family Conference has included clinical research opportunities for which families can volunteer to help advance science and understanding of the conditions. National Family Conferences are 3-day events typically held in July of each year.  The NFED offers Family Conference Scholarships to families needing financial assistance to attend the national event. 

If you are not able to attend this year’s conference, make plans for next year! Please, keep reading our blog, go to twitter @NFED_ORG or go to our Facebook Page as well as our website: nfed.org  or how about checking out the numerous videos on YouTube with worthwhile information or give the NFED Office a call 618-566-2020!

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