What’s going on with the research for x-linked hypohidrotic ectodermal dysplasia (XLHED) and EDI200? Last January, I announced that Edimer Pharmaceutical’s Newborn XLHED Clinical Trial did not achieve the outcomes which we had hoped for. In that trial, they dosed newborns who were affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) with a protein called ED1200…
Post Traumatic Growth
A positive result can come out of experiencing trauma or difficulty and working through the resulting emotions. This is called post traumatic growth, or PTG. Learn how this applies to ectodermal dysplasia and how you can nurture it.
AAD’s Camp Discovery
The American Academy of Dermatology’s (AAD) sponsors a free camp for children ages 8-16 who have a chronic skin disease called Camp Discovery.
Support Ectodermal Dysplasias on Giving Tuesday
Let’s do something good for the NFED community. Be a part of the growing global #GivingTuesday movement. The Bill and Melinda Gates Foundation will match up to $1,000 per each Facebook fundraiser page for the first $500,000
Our Voice on Capitol Hill
Becky Abbott is leading efforts to help NFED families understand their insurance benefits and educate legislators for coverage for ectodermal dysplasias.
Collaborating With Friends Globally
By Mary Fete Here it is November with the holidays just around the corner. For you, I am sure that it has been a busy fall. It is always so hectic getting the kids back to school and/or working on the end of the year work commitments. Fall is rapidly ending (although the weather in…
NFED.Org Gets Extreme Makeover
By Mare Fete, Executive Director Great news! Our online home at www.NFED.org has had an extreme makeover. We have launched an entirely new website to better serve our ectodermal dysplasias community. It’s our gift to our families, donors, volunteers and care providers in celebration of our 35th anniversary. Families complained about the old site, how…
How This Teen Takes On Life With Ectodermal Dysplasia
By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…