How do you help your little ones affected by ectodermal dysplasia prepare for all of the dentist visits they need? What can you do to explain and show them what getting dentures is going to be like? Check out our resources and suggestions for how to make your child’s experience at the dentist be a positive one.
A Wig Sister is Living Her Best Hair Life
Jessica Reece has always had super thin, fragile and unmanageable hair due to EEC syndrome. Find out how trying a wig has changed her life. Plus, learn Jessica’s best tips for purchasing, choosing, caring for and styling a wig.
A Smile Is the Best Makeup Any Girl Can Wear
Elizabeth Hoverman faced treatment failures and a pandemic delay to get her beautiful smile. The artist shares her exhausting six-year journey and why she can’t stop smiling.
Don’t Sweat? Here’s What You Need to Know
Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.
Remembering Joanna Daniel Nix
NFED Founder Mary K. Richter recalls the beautiful person, Joanna (Daniel) Nix. Joanna was affected by EEC syndrome and was one of the NFED”s founding families.
Life in a Raindrop
Elizabeth Hoverman has an extraordinary talent for perceiving color and expressing herself through beautiful art. Her photography has won contests and was recently celebrated during Rare Disease Week on Capitol Hill. Affected by EEC syndrome, this artist invites you to look beyond the surface – of her art and her syndrome.
Missing Fingers Bonds Three Amigos
Having missing fingers can get you bullied. It can also help you find life-long friends. Read about Tyler, Zemery and Nollan’s special friendship and how going to the NFED Family Conference impacted them.
Running the Disney Princess Half-Marathon with EEC
Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.