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.
Pregnant Mom Travels Around the World For Her Unborn Son
A mom’s dream to give her unborn son working sweat glands sent her on a journey around the world during a pandemic. Watch this video to hear her story and the treatment for x-linked hypohidrotic ectodermal dysplasia they received.
Only Your Voice Can Tell the Story
The momentum for the Ensuring Lasting Smiles Act continues to build in this new session of Congress. Find out how using your voice on April 28 is the only way to demonstrate the importance of this bill.
Rise Up and Celebrate Caregivers
Today, we rise up and celebrate all of the caregivers around the world as part of Ectodermal Dysplasias Awareness Month! We pay tribute to everyone who has made someone’s ectodermal dysplasia journey a little easier.
ELSA’s New Bill Leads for 117th Congress
The Ensuring Lasting Smiles Act has new leadership in the U.S. House of Representatives! Find out who they are and how you can take immediate action that would make a lasting impact.
How I Diagnosed Myself With a Rare Disorder
Erica Green is a young woman who spent her life without a name or explanation as to why her teeth were missing and different. Because she presented “normally,” no doctor or dentist ever had answers or a name. Then, she broke her denture and sent her on a journey to self-diagnosis.