At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.
Growing up isn’t easy, especially if you are a child affected by ectodermal dysplasia.
Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.
It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.
With 100+ different types of ectodermal dysplasias, understanding them all can be overwhelming! Watch this free webinar with pediatrician Tim Fete. He gives a comprehensive overview of the conditions to help you better understand what ectodermal dysplasias are, some of the most common types and what body parts can be affected.
Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.
In recent years, we have learned that one gene is now the cause for three different types of ectodermal dysplasia. Learn more about the gene called WNT10A and how it manifests.
You can help us crush our 2019 goals. Do you want to be a monster or a mummy? Want to bid on some great prizes? Or, could you make a few clicks to advocate for our important bill? We are looking for volunteers to help with all of these to improve lives for the ectodermal dysplasias community.