Over the last two years, the NFED had to adapt to virtual volunteerism and fundraising in response to a global pandemic. See how you can get involved with these efforts.
Big News in the House for ELSA
Families affected by congenital anomalies are closer to getting health insurance benefits for the medical and health treatment they need. Our bill to mandate such payments took a big leap in the U.S. House of Representatives. Find out what the consensus calendar means and how you can help pass the Ensuring Lasting Smiles Act.
How Our NFED Family Came To Be
What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.
Awareness. Advocacy. Action.
February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on! In honor of Ectodermal Dysplasias Awareness Month (EDAM), please help us spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.
Alaskan Advocates Get 100% Support for ELSA from Their Legislators
Two Alaskan families have helped achieve an amazing feat. The Brubakers and Wentzels have every legislator in their state co-sponsoring the Ensuring Lasting Smiles Act (ELSA)! This month, we shine our volunteer spotlight on these Alaskans to celebrate their accomplishments and learn more about how they did it.
Why Genetic Testing is Critical in HED
If you or someone you love is affected by hypohidrotic ectodermal dysplasia (HED), a doctor or dentist may have made the clinical diagnosis based on symptoms. Or, maybe HED runs in your family and you “just know” that you or your child have it. So, why would you want to get genetic testing to confirm the diagnosis? There are many benefits. But, most importantly because the first treatment for the X-linked recessive type of HED is being studied in a clinical trial.
The Dickie Family’s Full Circle Moments with Ectodermal Dysplasia
John Dickie IV was a young adult when he attended his first NFED Family Conference in 1987. His eyes were opened when he saw older guys affected by ectodermal dysplasia who had families and careers. Their lasting impression made him and his family want to give back to the NFED family, too. Read about the Dickies’ ectodermal dysplasia journey, their love for the NFED, John’s adventures and the advice he has for parents.
Let’s Celebrate 40 Years of NFED Success!
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!