Volunteering Is Who I Am

Volunteering for Dr. Kathleen Motil is as natural as sunrises. Learn how she’s spent 20+ years helping families with ectodermal dysplasias learn about nutrition as a volunteer for the National Foundation for Ectodermal Dysplasias.

Becky Abbott Joins NFED Staff

Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.

We Should Love Our Lives

Cyprian Katongo grew up in Zambia being bullied and dissed for having hypohidrotic ectodermal dysplasia. He endured the pain and asked God, “Why do I have this condition?” Find out not only how he endured but how he has triumphed and is sharing a message of love and hope.

Hazel Glows With Her New Teeth

Your five-year-old daughter wearing her first dentures can be surreal. Just ask Sarah Hamilton. The mom shares about how the teeth have impacted Hazel’s eating and speech and how they are having to battle their insurance to get benefits.

My Son Has Only Six Teeth

Sheltered as a child because of ectodermal dysplasia, Beth Orchard is raising her kids differently. This advocate is giving her children the same opportunities as kids who can sweat and eat normally. She’s taking bold steps to make a difference and wants you to join her.

Breast Development and Ectodermal Dysplasias

Did you know that ectodermal dysplasia can affect breast development in both females and males? Learn how and why it’s related to sweat glands in this new library article. Find out about the various ways breasts can be affected, potential treatment options and how to discuss the issue if your child is affected.

We Exceeded Our Goal!

Thanks to all of you who set up Facebook Fundraisers and who donated whether it was through Facebook, our website, or through the mail, we received over $39,000 in donations on #GivingNFEDTuesday. To say we were overwhelmed by the generosity of our NFED community would be an understatement. Thank you from all of us at the NFED for your…

Our Baby Rocker and King of Spreadsheets

From rocking babies at the Family Conference to serving as interim executive director, Anil Vora has done it all for the National Foundation for Ectodermal Dysplasias in the last 30 years. We thank him for his unparalleled commitment and Board leadership.