Clouston syndrome can cause significant nail abnormalities which can be a source of physical and emotional pain for many women. Read their stories for how they cope. Plus, download our new library article written by dermatologists on how to best treat the nails.
Forty Years of Driving Ectodermal Dysplasias Research
As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!
Palmoplantar Keratosis in Clouston Syndrome
For people affected by Clouston syndrome, the skin on their palms of their hands and soles of their feet can be thick. We have published a new medical article which explains the condition and the best ways to treat it.
Clouston Syndrome: Perfectly Different
Addison Kemper spent her life being told she’s perfect, but knowing she was different. She had little hair and problems with her nails. Kids bullied her. Life was hard at times. She knew she must have a condition of some kind but found no answers. Her baby’s arrival led her to a diagnosis for both: Clouston syndrome. Those two words opened the door a new world.
Bridges to Inspiration
I spent a good part of Sunday walking around Portland, Ore. and reflecting on the 2018 National Foundation for Ectodermal Dysplasias (NFED) Family Conference. People passing me likely thought I was in another world. I was smiling and laughing as I strolled along the river walk. One person stopped me and said, “Wow! You must…
Top 10 Syndromes that Affect NFED Families
Learn which of the 180+ different types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!