We are so EXCITED to announce where our next three Family Conference will be held! Last year, we were on the East Coast. This year, we went to the West Coast. Our next stop is…
This is Us
We are your NFED team! We’re a mighty crew of six women. We couldn’t be more different. And that’s a good thing! But we are the same in one way. The most important way. The six of us are passionate about families affected by ectodermal dysplasia and doing what we can to help you. Since we typically get to learn about you, we thought it was our time to share. This is us.
Building Your Legacy
I recently read a meme that said you only have 18 summers with your kids, enjoy every moment. This moved me and got me thinking about how time is precious and should be cherished with our loved ones while we are here on this Earth. I reflected on my life and started to think about what kind of impact I want to make on my family and others when I’m not here. What do I want my legacy to be?
Jacob Moss Photo Project Call To Action
Jacob Moss is looking for individuals with ectodermal dysplasia, ages 15-50, to participate in his photo project for his graduate thesis. His goal is to capture the diverse mix of people who happen to be affected by the various types of ectodermal dysplasia.
Welcoming New Volunteers to our Board and Council
We are happy to announce that Roy Moffitt has joined the NFED Board of Directors and Dr. Beau Meyer, a dental researcher, has joined the Scientific Advisory Council.
Four Key Takeaways from NFED’s 2017 Annual Impact Report
As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017.
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.”