Life has been full of surprises for the Sanmiguel Bejarano family. They are teaching their daughters how to rally in the face of the unexpected. Alicia and Luna share what they want others to understand about their rare condition. They are becoming the Voices of the Future for ectodermal dysplasias.
The Value Of One. The Power of Many Voices.
It’s Volunteer Appreciation Week! We celebrate the incredible people who stepped up during a pandemic and helped us advance our mission. Learn what that looked like, what we are planning next, and how you can add your voice!
Check Out These Budget Friendly Webinars About Ectodermal Dysplasias
Are you ready to learn more about ectodermal dysplasias from our experts? Check out these affordable webinars you can attend right from the comfort of your couch. Plus, the meeting format lets you connect with other families.
Cyprian – A Voice in Action in Africa
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.