Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.
Your five-year-old daughter wearing her first dentures can be surreal. Just ask Sarah Hamilton. The mom shares about how the teeth have impacted Hazel’s eating and speech and how they are having to battle their insurance to get benefits.
Did you know that ectodermal dysplasia can affect breast development in both females and males? Learn how and why it’s related to sweat glands in this new library article. Find out about the various ways breasts can be affected, potential treatment options and how to discuss the issue if your child is affected.
Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.
Every day, the NFED staff receives calls, emails and social media messages about the terrible struggles families have getting coverage for their dental care. Insurance coverage issues have plagued our community for decades. Raise your voice with us to take action. We need just one more Representative to cosponsor and introduce a Bill. We have four different opportunities for you to advocate.
Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.
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.
The Abbott family’s journey to new teeth for their son, Aidan, has not been an easy one. They have had to fight their insurance company every step of the way for years. Find out why his mom thinks it worth it and why every family must fight, too!