Team Nikko Finds Home in the NFED

Dave Reidenouer is the kind of dad and grandpa who jumps in to help when his family needs him. For him, family means, “coming together to overcome obstacles and challenges, working together to do fun and good things.” And that’s exactly what his family has done since their first grandchild, Nikko Vecchini, was born affected by hypohidrotic ectodermal dysplasia. Read how the NFED became their lifeline.

World Experts Collaborate to Advance Ectodermal Dysplasias Research

For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.

XLHED Clinical Trial of a Prenatal Treatment Begins

The EspeRare Foundation and Pierre Fabre Group announced that EDELIFE, the clinical study of a treatment for XLHED, has begun! Learn more about the ER-004 treatment and if you are eligible to participate in the trial.

Where Can You Turn When You Need Support? The NFED Of Course!

At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).

Fever and Ectodermal Dysplasias

By Tim Fete, M.D., M.P.H. and Clayton Butcher, M.D. Fever and ectodermal dysplasia can be tricky for parents. Your child is running a temperature and acting a little lethargic. Is he getting sick? Or, is he overheated because he doesn’t sweat correctly? Should you treat the fever? Should you call your doctor? All of these…

How Hair Made Me Confident

Charlotte Smith knows what it’s like to be a young woman with thin hair. Learn her best hair tips and how having hair has changed her.