First Dentures for Hazel: Her Mom’s Perspective

Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.

Why We Must Keep Fighting

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!

Diagnosed Over the Phone With Ectodermal Dysplasia

When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.

Ectodermal Dysplasias Awareness Month 2018

This February, we are asking you, our community, to participate in Ectodermal Dysplasias Awareness Month. Our goal is to create awareness, raise money and advocate for health benefits for dental care of ectodermal dysplasias. Our theme this year is “Advocate for Super Smiles.”

NFED Was A Bridge Between My Two Worlds

I was born with x-linked hypohidrotic ectodermal dysplasia (XLHED) because of a random mutation. The NFED was a bridge between the two worlds I felt I lived in: one where I could pass as someone who looked unaffected and the one where I knew the issues I faced as a person affected by XLHED. Once I got married and started talking about wanting children was when I began volunteering with the National Foundation for Ectodermal Dysplasias (NFED). I will not give up volunteering with the NFED until we find coverage for my son, Liam’s, teeth and the many others affected by missing teeth.

Mr. and Mrs. Weirdo and Goofball

Growing up affected by hypohidrotic ectodermal dysplasia, Everett Hamilton never dreamed he would marry or have kids. Then, Sarah asked him on a first date and all of that changed.

Health Insurance Claims and Teeth 101

By Susan Barbey Rule 1 Know What Kind of Health Insurance You Have Individual health insurance policy, or Group health insurance through employer Rule 2 If You Have Group Health Insurance Through An Employer, Call Your Plan Administrator and Ask The Following Questions Is this health insurance an insured-plan (sold by a licensed insurance company)?…