Family Conference Sponsors Needed

Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED).  Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…

You’ll Never Be Alone Again

By Maureen Having ectodermal dysplasia can be hard.  Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone. I don’t know which type of ectodermal dysplasia I…

Four New Board Members Added

We welcome four new members to the National Foundation for Ectodermal Dysplasias (NFED) Board of Directors: Karl Nelsen, Keith Throm, Marianne Vermeer and Dr. Tim Wright. Volunteering for a Board takes a huge time commitment. Their input is valuable as they steer the NFED and keep us moving forward. Karl Nelsen has been a member of…

Inability to sweat doesn’t keep area man from farming or playing with kids

Charlie Richter was a poster child for the National Foundation for Ectodermal Dysplasia in the 1980s, with his pale skin, bald head, flat nose and kid-size dentures. What the images didn’t show was the most serious symptom of his genetic disorder: The inability to sweat.

Ectodermal Dysplasias Awareness Month 2017

An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these…

Kick off the New Year by Becoming an NFED Smile Maker!

Join our quick, easy, and affordable monthly giving program, the National Foundation for Ectodermal Dysplasias (NFED) Smile Makers, today! Thousands of affected families and individuals have turned to the NFED as a pillar of hope.  Please grow and sustain our work so we can continue to support our friends and family affected by ectodermal dysplasias….

2016: Our Year in Review

When I look back over 2016, it brings a smile to my face when I see what we, the National Foundation for Ectodermal Dysplasias (NFED) family, have accomplished. We have truly been blessed with a wonderful year. You helped us accomplish many goals. We are truly grateful that each of you are a part of our family.

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