Even a government shutdown couldn’t stop our amazing ELSA advocates! More than 150 people met with lawmakers in Washington, D.C. Find out how NFED families and friends made big progress for the Ensuring Lasting Smiles Act on Capitol Hill! Learn how you can help keep the momentum going to get ELSA passed.
Rare and Remarkable: Boys with Goltz Syndrome
Ever wonder what it’s like for boys born with Goltz syndrome? This blog shares their rare and inspiring stories! Learn why they’re so unique, how the condition affects them, and how the NFED’s new resource helps parents through that important first year.
How Men With XLHED Can Help the Edelife Clinical Trial
Talking about genetic conditions in families can be hard. Some families, like Peter and Beth’s below, may be able to trace x-linked hypohidrotic ectodermal dysplasia (XLHED) back to the 1850s. Others may be learning about it for the first time. Either way, if you are a man affected by XLHED, your female relatives might not…
Finding My Diagnosis, My Voice and a Community That Gets It
Imagine going 37 years without knowing why you faced so many health struggles. That was Lindsey’s life until she finally got answers. In this blog, she shares her journey from silence to strength, how she found community, and why she’s determined to advocate for her kids.
How My Daughter and I Brought ELSA Advocacy Home to Utah
Read how a mom and her daughter from Utah worked hard to share their story and talk with lawmakers about the Ensuring Lasting Smiles Act. Their journey shows how being kind, not giving up, and meeting in person can make a big difference for families like theirs and for ELSA. She walks you through step by step what she did to be successful.
Greg Klimovitz Named NFED’s Next Executive Director
Change is a part of every great story and today marks the beginning of an exciting new chapter for the National Foundation for Ectodermal Dysplasias. On behalf of the Board of Directors, we are pleased to share that Greg Klimovitz has been named as the NFED’s next executive director.
Meet Three Babies Affected by Goltz Syndrome
Meet Eliza, Finley and Emmeline and learn about their first year of life. Each are affected by Goltz syndrome but in different ways. Their stories will help parents expecting or who have a newborn with this condition navigate the unknowns of this complex syndrome. Plus, download NFED’s comprehensive new resource: A Guide to the First Year of Life: Goltz Syndrome / Focal Dermal Hypoplasia.
Dr. Clark Stanford’s Inspiring Commitment to Families Affected by Ectodermal Dysplasias
Discover how a chance encounter with a young patient set Dr. Clark Stanford on a lifelong mission with the NFED. For more than two decades, Dr. Clark Stanford has combined skill, compassion, and heart to transform lives of families affected by ectodermal dysplasias. He’s the NFED’s Scientific Advisory Council chairman whose journey shows the powerful impact of care rooted in empathy. Read his story.