Let’s work together during Ectodermal Dysplasias Awareness Month to fundraise! We can help you brainstorm and plan an activity or an event. You can also download tool kits we have to make it easy. Are you ready to plan some fun for a good cause?
Families Rise Up for International Ectodermal Dysplasias Awareness Day
Sporting blue, families take to social media to celebrate their loved ones affected by ectodermal dysplasia.
Pregnant Mom Travels Around the World For Her Unborn Son
A mom’s dream to give her unborn son working sweat glands sent her on a journey around the world during a pandemic. Watch this video to hear her story and the treatment for x-linked hypohidrotic ectodermal dysplasia they received.
Rise Up and Celebrate Caregivers
Today, we rise up and celebrate all of the caregivers around the world as part of Ectodermal Dysplasias Awareness Month! We pay tribute to everyone who has made someone’s ectodermal dysplasia journey a little easier.
It’s Time to Rise Up for Rare!
You are invited to join us to celebrate our community! It’s Ectodermal Dysplasias Awareness Month and we have lots of fun ways for you to get involved and spread the word.
Show Us Your Super Smile
You can join families around the world in celebrating Ectodermal Dysplasias Awareness Month and Rare Disease Day. Use our easy tools to share your story and advocate for super smiles. Teeth are not cosmetic! Post our flyers. Share your story. Host a Facebook fundraiser. Attend a Rare Disease Advocacy Event.
Ectodermal Dysplasias Awareness Month 2018
This February, we are asking you, our community, to participate in Ectodermal Dysplasias Awareness Month. Our goal is to create awareness, raise money and advocate for health benefits for dental care of ectodermal dysplasias. Our theme this year is “Advocate for Super Smiles.”
NFED Was A Bridge Between My Two Worlds
I was born with x-linked hypohidrotic ectodermal dysplasia (XLHED) because of a random mutation. The NFED was a bridge between the two worlds I felt I lived in: one where I could pass as someone who looked unaffected and the one where I knew the issues I faced as a person affected by XLHED. Once I got married and started talking about wanting children was when I began volunteering with the National Foundation for Ectodermal Dysplasias (NFED). I will not give up volunteering with the NFED until we find coverage for my son, Liam’s, teeth and the many others affected by missing teeth.