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.
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.
What to Expect if Your Newborn is Affected by Goltz Syndrome
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!