Sheltered as a child because of ectodermal dysplasia, Beth Orchard is raising her kids differently. This advocate is giving her children the same opportunities as kids who can sweat and eat normally. She’s taking bold steps to make a difference and wants you to join her.
Returning to Capitol Hill
We’re going back! To Capitol Hill for our 2nd Ectodermal Dysplasias Advocacy Day. We invite the ectodermal dysplasias community to join us July 17-18 in Washington D.C. Our goal is to ask Congress to support a bill (to be announced soon) that will provide insurance benefits for dental care of ectodermal dysplasias.
First Advocacy Day Was a Landmark in NFED History
Our first Ectodermal Dysplasias Advocacy Day was an extraordinary moment in the history NFED. 175 people stormed Capitol Hill to educate our Congress.
Advocacy Day On Capitol Hill: What To Expect
Learn what to expect, where to go, what to say and more if you are attending the 2017 Ectodermal Dysplasias Advocacy Day on Capitol Hill.
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 Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias (NFED) at…
Advocacy Strategy Shifts to Federal Level
Again, over the past month, we have received numerous calls from individuals who are desperately trying to get insurance coverage for their or their child’s dental treatment. It is exhausting!
Expanding Our Volunteer Team in 2017
Service and giving are qualities that are greatly cherished by all of us at the NFED. You, as a volunteer, help our organization by lending a kind helping hand – and our only payment to you are wages of love, gratitude and knowing that you are making a significant impact on lives. Everyone has such busy…
NFED Families on Capitol Hill
By Marc Steingesser NFED Liaison On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members…