Volunteers Assist The Unknown

Our volunteers mean so much to us! With the help of three graduate students, our latest endeavor, the Unknown Project, has reached so many NFED members. We’ll tell you a little bit about the Unknown Project, and how these amazing individuals are helping families get a diagnosis.

Meet Your Kids Camp Director!

Aubrey is a creative who is leading our At Home Edition of Kays’ Kids Camp and Teens Program. As a life-long member of the NFED family, she knows first-hand how important it is for kids with ectodermal dysplasia to connect and have fun.

A Grandma’s Greatest Passion

At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.

A Champion for the Ectodermal Dysplasias Community

Dr Lisa Knobloch is a dentist who passionately cares about individuals affected by ectodermal dysplasias. For more than a decade, families have flocked to the NFED Dental Treatment Center she founded at The Ohio State University. Read about the extensive services and financial assistance they offer and what families have to say.

This is a Family Affair

Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.

Help Us Crush Our 2019 Goals

You can help us crush our 2019 goals. Do you want to be a monster or a mummy? Want to bid on some great prizes? Or, could you make a few clicks to advocate for our important bill? We are looking for volunteers to help with all of these to improve lives for the ectodermal dysplasias community.