When I sat down with Sam and Jennifer Hicks over breakfast in Boise, it didn’t take long to feel the warmth this family brings to everything they do. Sam is a National Foundation for Ectodermal Dysplasias (NFED) family liaison, a husband, father of two, and someone who has spent most of his life refusing to let…
Does My Child Need a 504 Plan or IEP?
Navigating school with ectodermal dysplasia is easier with the right roadmap. This resource simplifies the valuable tools of 504 plans and IEPs that can help create a safer, more supportive environment. Learn how these options work and how to decide if they are the right fit for your child’s success.
Why We Still Need ELSA
Ten years later, we’re still fighting for ELSA—and it still matters. Soren and Morgan share why families need fair coverage and how advocacy brings hope. Learn what you can do to take action in your home state.
45 Years of NFED: How One Mom Changed Everything
In 1981, one mom had an idea that changed everything. Forty-five years later, the NFED has grown into a global community of 11,100 families. Read how we got here and look back and marvel at 45 accomplishments in 45 years!
Ectodermal Dysplasias Resources in the Age of AI: What Every Family Should Know
For 45 years, the NFED has met families where they are, from typewriters to TikTok. Now comes AI. Before you search, here’s what you need to know to stay safe, informed and connected to the people who matter most.
Small NFED Fundraisers, Real Impact
Our families have found creative ways to fundraise for the NFED doing things that they love. Find out how they made friends, built community, and raised awareness along the way. Get inspired to have your own small fundraiser and make an impact!
Finding Faith, Recovery and Confidence, One Smile at a Time
Paul grew up feeling different and was bullied for his teeth. He followed a dark path for many years before deciding he wanted a different life. Today, he’s sober, married and helping others. His journey is honest and hopeful and living proof that no matter your past, your future can still be bright.
Join Our Team: Director of Research
Be the Bridge Between Science and Hope The National Foundation for Ectodermal Dysplasias (NFED) is seeking a passionate, collaborative leader to serve as our Director of Research. This is your opportunity to make a lasting impact in the rare disease community by connecting groundbreaking research with the families who need it most. About This Role…