They dissed him. Called him names. Made fun of his appearance. Their voices rang in his ears every day. Voices filled with ridicule and hate. And for what reason? Simply because he was affected by a rare disorder. One day, Cyprian Katongo chose to listen to different voices. His life of suffering took a new direction….one he defines as H.E.D.
What You Need To Know To Help Your Child’s Vision If They Have IP
Lacy Light shares her family’s experience and hard won wisdom from their fight for their daughter’s vision. This dedicated mom hopes to help other IP families with a new resource filled with tips and suggestions.
Sharing Mighty Ronan’s Story Makes All the Difference
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.