If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.
Check Out These Budget Friendly Webinars About Ectodermal Dysplasias
Are you ready to learn more about ectodermal dysplasias from our experts? Check out these affordable webinars you can attend right from the comfort of your couch. Plus, the meeting format lets you connect with other families.
What You Need To Know To Help Your Child’s Vision If They Have IP
Lacy Light shares her family’s experience and hard won wisdom from their fight for their daughter’s vision. This dedicated mom hopes to help other IP families with a new resource filled with tips and suggestions.
Know the Facts About the COVID-19 Vaccine
We offer key information to help you determine with your physician whether or not you should get the COVID-19 vaccine.
When Your Child Is Diagnosed With Failure To Thrive
It’s not easy when your child is not growing as expected. You want them to be healthy. A mom shares her emotional journey with her toddler who has failure to thrive (FTT) and hypohidrotic ectodermal dysplasia. Explore a new resource the NFED offers for FTT.
How to Help Dry Mouth in Ectodermal Dysplasia
Hoarse voice? Difficulty swallowing? Dry mouth may be cause your issue. Learn about how ectodermal dysplasia can affect your salivary glands and what you can do to manage it.
COVID-19 Vaccination and Ectodermal Dysplasias
Should you get the COVID-19 vaccination if you have ectodermal dysplasia? We’ll share with you our thoughts as well as those from the National Organization for Rare Disorders.
2021 Conference From Your Couch
Join us for conference from your couch! We are excited to share with you the 2021 National Foundation for Ectodermal Dysplasias (NFED) Webinar Series. You won’t want to miss this stellar line-up of speakers and our most asked about topics. Not only will each hour-long webinar provide lots of valuable information but you will be…