The NFED is proud to welcome Dr. Patricia Marik to our Scientific Advisory Council. Learn what drew her to the NFED and how she aspires to help families affected by ectodermal dysplasias with their emotional health.
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
Are you a part of the largest organization for families affected by ectodermal dysplasias? Some of our members weighed in on what they have found to be the biggest benefit of joining the National Foundation for Ectodermal Dysplasias. Find out why the NFED is where you belong!
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
Laurel is a 12-year-old girl with ectodermal dysplasia who wants to share her school experience with other affected kids. Learn what she has to say about teaching teachers, having an IEP, managing PE and handling bullies.
Our NFED family gathered in Colorado, for a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Mary Fete thinks it just may have been the best yet! Read about the impact, see the photos and learn where next year’s Family Conference will be!
For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.
Tina Moss shares her 61-year journey to finally make peace with her sparse hair. Affected by hypohidrotic ectodermal dysplasia, she explores wearing wigs and discovers more of herself in the process. You can also download our new Sparse and Brittle Hair Guide to get answers, product suggestions, and prevention tips from our dermatologists.