Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! We welcomed not only our families but also care providers and members of other organizations. Our goal was to empower them to advocate for themselves and on Capitol Hill. Watch the highlight reel and read about our great success and new friends made!
The Impact of Volunteers on the NFED
It’s Volunteer Appreciation Week and we have a lot of people to celebrate and thank. Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference.
How The Stand Together Conference is Unique This Year
This year’s summer event is going to look a little different than other years. Find out what you can expect when you attend the Stand Together Advocacy Conference and how you’ll leave empowered to advocate for yourself at home and on Capitol Hill!
Financial Consultant Gives Heart and Time to Help Her Son’s Tribe
Marianne Vermeer’s “guardian angel” of a dentist encouraged her to get involved with the NFED. She jumped all in becoming an active volunteer and member of the Board of Directors. Read about the powerful moment she had as a volunteer and what she’s learned about children with ectodermal dysplasia.
Pediatric Dermatologist Dedicates 26 Years to the NFED Family
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
We Reached New Heights Together at Family Conference
Our NFED family gathered in Colorado, for a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Mary Fete thinks it just may have been the best yet! Read about the impact, see the photos and learn where next year’s Family Conference will be!
All Things Family Conference
On February 15, I had the pleasure of joining some new and returning families on a webinar to answer all of their questions about the NFED Family Conference, which will take place July 14 – 16. If you weren’t able to join us at the webinar, I want to share some of the great questions…
Unreliable Electricity Makes It Hard to Stay Cool in Cuba
Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.