The National Foundation for Ectodermal Dysplasias (NFED) turned 40 years old on December 24, 2021. Normally, we would have recognized this milestone throughout last year. But, the pandemic caused us to shift our plans. Find out what we all have planned for this celebration year!
Please watch and enjoy this holiday greeting from our NFED staff. If only it could include all of the thousands of faces we had the honor of serving this year. May you and your family experience the incredible joys of the holiday season!
Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.
How do you help your little ones affected by ectodermal dysplasia prepare for all of the dentist visits they need? What can you do to explain and show them what getting dentures is going to be like? Check out our resources and suggestions for how to make your child’s experience at the dentist be a positive one.
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.
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.
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.
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).