It’s our first Ectodermal Dysplasias Awareness Month Photo Contest! Read the rules and download your sign today. Be creative and join the fun. It’s a great way to raise awareness.
Something Exciting is Happening at NFED.org
Receiving more than 6,000 visitors every month, we know that NFED.org is a critical, go-to resource for NFED families, professionals, researchers, and individuals affected by ectodermal dysplasias around the world. It is often the first place that new families enter the NFED, desperately looking for information and help. We consider it the NFED front door. …
Richter Receives NFED’s Highest Research Award
Our founder, Mary K. Richter, received a standing ovation as she was named the Kenneth S. Brown, M.D. Research Award recipient for her monumental impact on ectodermal dysplasias research. Timothy Fete, M.D., M.P.H., from the Scientific Advisory Council (SAC), presented the award to Mary Kaye at the Saturday celebration dinner at the Family Conference in…
Getting Ready for Family Conference
Good evening, Whew! Crazy, busy day in the office today. We are on the home stretch, moving full force ahead, getting the final details together for Family Conference next week! Can you imagine five women in the office along with two interns making sure all the I’s are dotted and t’s crossed? I bet you…
A Little About Me. A Lot About Family.
Greetings! I hope you had a wonderful holiday weekend full of lots of love, laughter and good time with family and friends. Here in the Midwest, we had cool temperatures on Friday and Saturday but we’re back to heat and humidity today. I love the 4th of July weekend. Usually, it means good barbecue, spending…
Conference – Where You Can Always Come Home to Your NFED Family
This year’s Family Conference is a Homecoming, meaning a place where you can come home to your NFED family. You will find people who will welcome you with open arms. You can rekindle friendships made long ago. You’ll remember the fun had at previous Conferences and make new memories. Home is the soft place you…
Free Genetic Counseling Services for Families Affected by HED or XLHED
Learn More on Live Chat – Thursday, May 29 on Our Facebook Page – 6:30 – 7:30 p.m. Central Time Dear NFED Families, Edimer Pharmaceuticals has teamed up with Informed DNA to provide free genetic counseling services to families who have or suspect to have hypohidrotic ectodermal dysplasia (HED) or x-linked hypohidrotic ectodermal dysplasia (XLHED). Informed DNA…
An Open Letter to Mr. Shaquille Neal
April 28, 2014 Dear Mr. O’Neal, All of us at the National Foundation for Ectodermal Dysplasias (NFED) are terribly disappointed by the hurtful image that you and others recently posted on social media about a member of our family, Jahmel Binion, who is affected by ectodermal dysplasia. Individuals affected by these rare, genetic conditions often…