It's About Time for A New NFED Website

By Mare Fete, Executive Director

Great news! Our online home at has had an extreme makeover.

We have launched an entirely new website to better serve our ectodermal dysplasias community. It’s our gift to our families, donors, volunteers and care providers in celebration of our 35th anniversary.

Families complained about the old site, how hard it was to find information and to navigate. We agreed! The old technology made it tough to view on your phone. They also shared ideas for things they would like to see on a new website. We listened! We are confident that you will find the new site to be a huge improvement.

Here’s what you can now do on the new website:

About Us – Watch and share our video to raise awareness, learn about our staff, Board of Directors and councils; read our financials; contact us and shop our store.

Learn – Read about what the ectodermal dysplasias are, the different types, how to get a diagnosis, genetics, inheritance and research.

Treat – Find information on how to find a doctor or dentist, medical and dental treatment options and how to fund treatment

Thrive – Meet our families, learn tips for how to cope with a new diagnosis and what you can expect.

You can now easily

Today is just the launch. We will be adding fresh content regularly so that you can find all things NFED on the site.

Tell Us What You Think

We hope that you enjoy and use the new website! You can share your feedback on our Facebook page or by emailing us.

We Thank Our Donors

We are especially grateful to a special group of donors who underwrote our new website. Thank you, Edimer Pharmaceuticals, The Hubbard Broadcasting Foundation Louis J. and June E. Kay Foundation, Straumann Corporation and Anil S. Vora.

Volunteers Provided Leadership

We also thank our Website Committee who volunteered their time for the last 18 months to this project: Barr Bauer, John Cooper, Kate DiCarlo, Lindsey James and Anil Vora. Their guidance and expertise were crucial to our success.

Share the Link – Raise Awareness

After you have perused the site, share it with your friends and family. There is great information to share about ectodermal dysplasias and the wonderful families we serve. Together, we will tell the world about ectodermal dysplasias!


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