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.

Remembering Lee: A Man Among Men

NFED Founder Mary K. Richter remembers Lee Goggin, who passed unexpectedly following a tragic accident, as a man among men. In him, parents in the ectodermal dysplasias community saw a bright future for their own children which they now knew could include a beautiful wife and gorgeous, precious children.

My Life as Nurse, Mom and Advocate

In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.

This Is Not Some Hollywood Smile Issue

A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.

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.

Adopting My Daughter With Goltz Syndrome

Choosing to adopt a child with a rare condition can be daunting. Caroline Ruhl has done it twice. Read about the journey that led her to adopting a spunky and beautiful child who happens to have Goltz syndrome.

Miss Wiggy

Hi, My name is Niamh and I’m 17, from West Yorkshire. I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently. I cannot explain how amazing these wigs make me feel. They have boosted my confidence dramatically. I am…

How I Replaced the Lonely Feeling With Hope

Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.

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