Each February, we come together to celebrate Ectodermal Dysplasias Awareness Month! A time to amplify voices, share stories, and raise awareness about these rare conditions. This year, join us for our first annual Blue Out for Ectodermal Dysplasias! Join our movement by wearing blue and to show your support in your local community during the month of February. Grab a selfie and post to social media with #NFEDBlueOut for the chance to win a free t-shirt!
Want to share about ectodermal dysplasias and our Blue Out this February with your local community? Download our awareness month flyer and spread the word!
Download Awareness Month Flyer
You can also make a donation this February to help us continue our mission at www.nfed.org/donate
Educate Yourself
Ectodermal dysplasias are rare genetic conditions affecting hair, teeth, nails, sweat glands, and skin. With over 50 types impacting 14 in 100,000 new births, diagnosis and treatment can be complex.
Become a Member
Join a supportive community of over 10,660 families, care providers, and volunteers. Gain access to resources, connections, and our monthly 5 Things newsletter uniquely designed for YOU!
Clinical Trials
The NFED has led XLHED research for 30+ years, leading to a potential in utero treatment. The EDELIFE clinical trial is currently seeking volunteers to confirm its safety and efficacy. Learn more about participating if you or your family are affected by XLHED.
Share Your Story
Help spread awareness by sharing your experience with ectodermal dysplasias. Your story can inspire others and remind them they’re not alone. Click below to share yours and make a difference.
Access Resources
Think you or a loved one might have ectodermal dysplasia? Explore our comprehensive resources to help identify symptoms, navigate treatment options, and find the support you need.
Connect with Others
Discover others in your local area, find a family liaison, or join our private Facebook groups for support and shared experiences.
Advocate to Support
Join the effort to educate others and support critical legislation for those with ectodermal dysplasias. Learn why the Ensuring Lasting Smiles Act is critical for families affected by ectodermal dysplasias and register as an advocate.
Host a Fundraiser
Start a Facebook fundraiser, organize a 5K, or get creative! Big or small, your efforts help raise funds and awareness to support the NFED mission. Contact Isabella, our Development Coordinator.
Don’t Miss a Thing: Update Your NFED Profile
Have you moved, changed jobs, or just gotten a new email address? Update your profile with your latest contact information so you don’t miss important news and announcements!
Not a member? When you join us, you are more than a member, you are a part of the NFED family!