If your baby is affected by Goltz syndrome, you’re not alone. Our new guide shares what to expect in the first year, practical tips for care, and stories from families who’ve been there. The NFED is here to support, comfort, and connect you every step of the way.
Dermatology Grand Rounds Highlight Power of Patient Stories
Curious how NFED families are helping doctors truly understand ectodermal dysplasias? Check out how twelve individuals stepped up to teach med students and doctors about ectodermal dysplasias at a recent Dermatology Grand Rounds. Their personal experiences provided a powerful way for the health care professionals to learn about these rare conditions so they can better diagnose and treat them.
Celebrating Before and After Smiles
Behind every bright smile is a journey of courage, resilience, and transformation. Discover the powerful stories of individuals with ectodermal dysplasia who overcame obstacles to achieve healthy, functional teeth and see their before and after photos. Let their experiences inspire your own path to oral health—and explore the resources that can help you every step of the way.
Mental Wellness & Individuals Affected by Ectodermal Dysplasias
Mental wellness sounds like a catchphrase because we hear about it more often in the news and in our social feeds. We may even discuss it with the people around us, but really, mental wellness is about how we take care of the mass of synapses, memories, and experiences in our heads, and that can carry a lot of weight sometimes. Living with, caretaking for, and supporting loved ones with a rare condition like ectodermal dysplasia can be a challenge. Learn about a new resource to help you with your mental wellness.
No Fingerprints Can Be An Ectodermal Dysplasia Thing
Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.
14 THINGS YOU DIDN’T KNOW ABOUT ECTODERMAL DYSPLASIAS
Learn something new with our list of 14 things you didn’t know about ectodermal dysplasias!
Best Practices for Treating Your Ectodermal Dysplasia Teeth
You have many different treatment options for teeth affected by ectodermal dysplasia. It can be overwhelming to know what’s the best thing to do for you or your child. Learn from our dental experts which treatments to consider to achieve an age-appropriate dentition.
New Guide to Help With Your HED Baby’s First Year
We’re excited to share with our community a new guide to help families navigate the first year of life for their baby affected by hypohidrotic ectodermal dysplasia (HED). It’s a wonderful resource whether HED runs in your family or you’re brand new to the disorder.