Our families made a significant impact on Ectodermal Dysplasias Advocacy Day! We need everyone in our community to meet with their legislators. We give step by step directions. Ask them to support future legislation which will provide insurance benefits for dental care for all ectodermal dysplasias.
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.
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…
A Summer of Ectodermal Dysplasias Research
It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….
Family Conference Sponsors Needed
Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED). Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…
Missing Teeth, Missing Benefits
It’s common for someone to be missing a tooth or even two teeth. Some studies report about 20% of all adults are congenitally missing at least one tooth. More than 5% of us lack one or more second premolars or upper second (lateral) incisors. Though, numerous missing teeth, is less common. Leads to Diagnosis When…
Life with Ectodermal Dysplasia
By Julie Kennedy Thirty years ago, my family began the journey called, “life with ectodermal dysplasia.” We didn’t know it at the time, but my husband had tooth and nail syndrome. Many in his family had it, but it was just shrugged off as weird shaped and missing teeth, a “Kennedy Thing.” It was not discussed…
Keep on Smiling: The Story of Lucy’s First Surgery
By Lucy Davies January 27th, 2017 is a date I will never forget. To most people, it marked the one week anniversary of Donald Trump’s inauguration, but I had something far more personal scheduled for that day – my first dental implant surgery. When growing up with ectodermal dysplasia, “implants” was a word constantly thrown…