Lindsay Claire is the type of mom who would climb a mountain if it meant helping her son, Ronan, who is affected by EEC syndrome. And climb a mountain height she did – all in an effort to raise money for the NFED. She shares their creative approaches and the key to their fundraising success.
We are Determined to Be the VOICES of Change
Together, we are the VOICES of ectodermal dysplasia. We are the many, many faces, races, cultures and ages – and when we bring together all our voices, we can make something remarkable happen! Find out how you can help.
ELSA Re-Introduced in Congress with An Amazing 161 Original Co-Sponsors
ELSA begins its journey in the 117th Congress with incredible bi-partisan support! Find out what this means and how you can help make this important bill become a law.
What I Learned from My Three-Year Dental Treatment Journey
Jamie Sommerville shares her best tips for how to get your insurance company to cover the dental treatment you need. Plus, learn what NFED resources made all the difference.
Know the Facts About the COVID-19 Vaccine
We offer key information to help you determine with your physician whether or not you should get the COVID-19 vaccine.
When Your Child Is Diagnosed With Failure To Thrive
It’s not easy when your child is not growing as expected. You want them to be healthy. A mom shares her emotional journey with her toddler who has failure to thrive (FTT) and hypohidrotic ectodermal dysplasia. Explore a new resource the NFED offers for FTT.
This Will Change You in the Best Way
The Fenoglio / Fodor family is showing their son Jackson how proud they are of him by volunteering. They believe in supporting your family. And for them, the NFED is family.
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.