Celebrate 25 years of the Halloween Bash with us! This amazing event started as a party and grew into a huge community of families and friends helping the NFED. Come learn how it sparked big changes, supported research and brought people together. Read how this fun event made a huge difference for people affected by ectodermal dysplasias.
Pamela Keeps Dancing Through Life’s Challenges
Pamela has faced vision loss, joint replacements, and countless medical challenges, but she’s never stopped dancing. It took her 40 years and research into her birth family to learn her medical history and diagnosis. Read how this inspiring grandmother keeps moving forward and encourages others living with incontinentia pigmenti to do the same.
Government Shut Down Doesn’t Stop ELSA Advocates
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.