Four Research Opportunities at the National Family Conference

Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…

A Doc’s Perspective on the NFED Family Reunion (aka Family Conference)

By Alanna F. Bree, M.D., NFED Scientific Advisory Council Attending the NFED Family Conferences are almost like a family reunion for me.  Even though I am not related to anyone who attends, the people I have met through the NFED have become like an extended family to me.  This includes babies, children & adults affected by…

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,…