Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”
The National Foundation for Ectodermal Dysplasias’ fearless leader is celebrating her 20th anniversary as part of the Foundation staff! Today, we celebrate all that Mary Fete, MSN, R.N., CCM, has accomplished and continues to do on behalf of the ectodermal dysplasias community worldwide. Mary officially joined the staff on February 27, 2002. The NFED’s founder,…
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.
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.
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.
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.
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.
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.