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.”
Thank You to Our Retiring Board Members
We thank the following four outstanding volunteers for their service to our Board of Directors. What all four of them have in common in how they served the Foundation is their love for our families. We are grateful for their big hearts and the combined thousands of hours they gave to the National Foundation for Ectodermal Dysplasias (NFED).
NFED Family Conference Sponsor and Program Ads
Each year, we hold our Family Conference to provide life-changing experiences for our NFED families. Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone, that they feel connected and that they finally get to have the experience of talking to doctors who…