Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.
Help Us Crush Our 2019 Goals
You can help us crush our 2019 goals. Do you want to be a monster or a mummy? Want to bid on some great prizes? Or, could you make a few clicks to advocate for our important bill? We are looking for volunteers to help with all of these to improve lives for the ectodermal dysplasias community.
Why Volunteering Can Change Your Life
Volunteering for the NFED gives you the opportunity to meet and help others with ectodermal dysplasias. But, you are the one who may benefit most. Learn more and sign up today.
Seventy-Five Strong
We thank our hard-working volunteers for the hours they so generously dedicated to the 2019 NFED Family Conference. Without them, this event would not be possible.
Advocacy from the Classroom to Capitol Hill
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
Running the Disney Princess Half-Marathon with EEC
Caitlin Brown was skeptical when her mom, Suzanne, wanted to join her in running the Disney Half-Marathon to raise money for the NFED. But she knew, there was no telling Suzanne, who is affected by EEC syndrome, she couldn’t do something. Find out how this mom-daughter duo did.
Our Volunteers Are Worth Their Weight In Gold!
For National Volunteer Month, the National Foundation for Ectodermal Dysplasias celebrates its volunteers for their 5,000 hours of service. It is mind boggling the tasks they accomplished to help the NFED and those affected by ectodermal dysplasias. Watch our tribute video and learn how you can volunteer to be a Social Media Ambassador, Advocacy State Lead or fundraiser.
What A Difference I Can Make
Your life can take a different path, one you never expected in a matter of a moment. Debbie’s changed when her first grandson was born. Little did she know on that day she would become a volunteer for the NFED.