The school year is winding down in the United States. If your child has ectodermal dysplasia and a 504 plan or Individualized Education Program (IEP), right now is the most important time to open that document back up. Learn the steps to take to review what’s worked and what needs adjusting to set up your child for success for the next school year.
Look Back at Our 2025 Impact Report
Together. That word has defined the National Foundation for Ectodermal Dysplasias (NFED) since its founding. As we reflect on 2025, it’s the one that best captures what we accomplished this past year. Our 2025 Impact Report is officially here! Look back at a year of more support, research, advocacy, and community for people with ectodermal…
More Than a Place to Stay: The Power of Being Truly Understood
Turning 30 and living at home felt rough. Then everything changed. This funny, real story shows how one friendship made life easier. Living with ectodermal dysplasia isn’t simple, but having someone who truly gets it can mean everything. Sometimes, the best support comes when you least expect it and need it most.
Sam’s Story: From Idaho Football Fields to NFED Family Advocate
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.