This blog offers a fresh take on building sustainable habits for better mental, physical, and spiritual wellness. Discover tips on mindful social media use, creative ways to stay active, and how to build meaningful connections—especially within the NFED community. Read more now!
XLHED Research Success: The Power of Family Participation
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!
New Board and Council Members Bring Expertise and Insights to the NFED
The National Foundation for Ectodermal Dysplasias (NFED) is thrilled to announce the addition of new leadership experts. Joining our Board of Directors, Patient Care Council, and Scientific Advisory Council, these four exceptional leaders will bring knowledge, experience and insights to advance the foundation’s mission of supporting and serving individuals and families affected by ectodermal dysplasias.
Research Conference Aims to Find Answers for Incontinentia Pigmenti
At the National Foundation for Ectodermal Dysplasias (NFED), we understand the pressing need for research into rare disorders like incontinentia pigmenti (IP). This complex form of ectodermal dysplasia has garnered little attention in the research community, and we’re committed to changing that with the Incontinentia Pigmenti Conference: Translating Discovery to Therapy.
The NFED is Growing!
The National Foundation for Ectodermal Dysplasias (NFED) is in a period of exciting growth as we welcome two exceptional additions to our team —Andi Kezh and Isabella Redding. Their roles as Communications Coordinator and Development Coordinator bring critical skills necessary to amplifying our mission, increase our resources, and better support individuals and families affected by ectodermal dysplasias.
You Wanna Be Where Everybody Knows Your Name: Family Conference 2025
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don’t just take Kelley Atchison’s word for it. Listen as NFED families share the impact the Conference had on them.
Family Conference is a collection of stories of hope- we would love to see you there!
New Congress, New Opportunities: How You Can Help Pass the Ensuring Lasting Smiles Act
The new 119th United States Congress began on January 3. What does this mean for the Ensuring Lasting Smiles Act (ELSA)? Find out what has shifted, how we’re moving forward and what you can do to help us get this important legislation passed.
You Inspire Me: Cue the Happy Tears!
Let’s look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.