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…

Dear Santa

We know that you have been good this year so we wrote our own letter to Santa on behalf of you and all families affected by ectodermal dysplasias.

It Takes A Village

By Karina Luna I am the proud parent of a child with hypohidrotic ectodermal dysplasia. When my son, Liam, 4, was first diagnosed, I was completely blindsided. His father, Leonardo, and I had never heard of this rare condition, nor did we know how unique his upbringing would be because of it. Upon finding the…

Can you believe it’s already the end of the year?

The National Foundation for Ectodermal Dysplasias (NFED) has had a breakthrough year from launching Advocacy Day to funding research projects that are on the brink of life-changing treatments and cures.  We cannot do this without our donors and volunteers. Thanks to all of you who give your hard-earned money and time to the NFED! The…

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