5 Reasons Why We Need You on Capitol Hill

Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected…

Webinar: Advocating for Ectodermal Dysplasias

Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…

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…

Taking Ectodermal Dysplasias to the Hill

By Becky Abbott As a member of the ectodermal dysplasia community, it has been frustrating, to say the least, having to deal with insurance, human resource administration, and politicians. We have submitted claims to insurance, had them denied, submitted again, denied again and been through the vicious circle so many times that we didn’t know where to…

It's Time For a Change: Advocating for Children with Rare Diseases

By Becky Abbott I’m frustrated and sometimes angry. I’m angry not only as a parent, but as a member of the rare disease community. Our journey started like so many other families who have children with rare diseases. It took several years, many doctor appointments and documenting symptoms. Finally, after being referred to a pediatric…

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