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.
How to Help Dry Mouth in Ectodermal Dysplasia
Hoarse voice? Difficulty swallowing? Dry mouth may be cause your issue. Learn about how ectodermal dysplasia can affect your salivary glands and what you can do to manage it.
It’s Time to Rise Up for Rare!
You are invited to join us to celebrate our community! It’s Ectodermal Dysplasias Awareness Month and we have lots of fun ways for you to get involved and spread the word.
Celebrate Kelley’s 20th NFED Anniversary!
Helping families with ectodermal dysplasias is her passion! Learn more about this staffer, the lives she’s touched and the many roles she’s played at the Foundation.