Jalen’s EEC syndrome story is filled with honesty, humor, and heart. She shares how she handled hair loss, bullying, and everyday challenges while building confidence along the way.
NFED Joins National Advocacy Groups to Amplify Patient Voices
Liam may only be nine years old, but he’s already making a difference on Capitol Hill. Alongside NFED families and other patient advocates, he shared his journey living with ectodermal dysplasia and the challenges of getting dentures. Read how NFED families and staff joined other patient advocates, dentists and researchers on Capitol Hill.
Join NFED Miles for Smiles and Help Families Feel Less Alone
For Beth, the National Foundation for Ectodermal Dysplasias is more than support. It feels like family. Her new virtual fundraiser, Miles for Smiles, invites people of all abilities to move, share their stories, and help families affected by ectodermal dysplasias feel less alone. Read how one mom is turning connection into action this June.
Shining Through: Living with Incontinentia Pigmenti
Kamiah’s story begins with uncertainty but grows into something powerful. Living with incontinentia pigmenti, she learns to turn stares into strength and questions into confidence. Guided by her family’s love and faith, she discovers that being different is her greatest gift. And, her story just might help another child shine, too.
How to Treat Short Stature in Goltz Syndrome
The NFED has been researching and studying growth patterns in individuals affected by focal dermal hypoplasia or Goltz syndrome. A new case study has documented that growth hormone was successful in treating affected children with growth hormone deficiency. Learn more about this treatment and if it could help your child.
Now Is the Time to Review Your Child’s IEP or 504 Plan for Ectodermal Dysplasia
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.