NFED Members Participate in Advocacy Days

Advocacy continues to be a major emphasis for us in 2017.  While we continue to plan for our Ectodermal Dysplasias Advocacy Day on Capitol Hill in July, we also recently participated in some other advocacy days. We are grateful to Becky Abbott, Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias…

Advocacy

By Beth Orchard I was told from an early age, I had the disorder, yet I was not diagnosed until my early thirties with x-linked hypohidrotic ectodermal dysplasia (XLHED). Being a young child with differences in my teeth, hair and skin (including lack of sweat glands) made me overly self-conscious. I was picked on and…