How You Can Volunteer in a Pandemic

Despite the crazy year of quarantine that 2020 was, numerous NFED volunteers still found ways to raise money and awareness for the NFED mission. Find out how you can get creative and get involved!

COVID-19 Vaccination and Ectodermal Dysplasias

Should you get the COVID-19 vaccination if you have ectodermal dysplasia? We’ll share with you our thoughts as well as those from the National Organization for Rare Disorders.

What’s Emotion Got To Do With It?

Kaitlyn Squibb knew all the ways that x-linked hypohidrotic ectodermal dysplasia affected her body. But, she’s finding strength as she learns how it impacts her emotions, too.

2021 Conference From Your Couch

Join us for conference from your couch!  We are excited to share with you the 2021 National Foundation for Ectodermal Dysplasias (NFED) Webinar Series. You won’t want to miss this stellar line-up of speakers and our most asked about topics. Not only will each hour-long webinar provide lots of valuable information but you will be…

Celebrate Our Successes With ELSA

As we enter 2021, you may be wondering what the status of the Ensuring Lasting Smiles Act is. Find out what progress we made and how you can sign up for our Virtual Advocacy Day in April.

HOPE is our Driving Force

In this year filled with so much uncertainty, HOPE provides us with the energy and determination to keep moving forward. Here’s what gives us hope!

EspeRare Partners with Pierre Fabre to Develop Treatment for XLHED

After a challenging year, we are excited to share some good news – just in time for the holidays! The EspeRare Foundation announced a new partnership today that brings us closer to developing a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare and Pierre Fabre group have entered into an agreement to develop and…