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.
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…
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.
Kerri Fasulo is teaching her daughter how to use her voice to create positive change. Find out what they doing to help you and your family.
Suzanne Brown ignored her painful eyes for years, always thinking, “I’m fine.” But she wasn’t fine. In 2017, she noticed that she was going to bed earlier in the evening because “my eyes were done.” Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Suzanne found a treatment that changed her life.
In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks. At the end of the year,…
Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.
Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.