A graphic that says Today is International Ectodermal Dysplasias Day. It has a hand holding a heart which looks like a globe.

The National Foundation for Ectodermal Dysplasias (NFED) joined other support organizations across the globe for the 2nd International Ectodermal Dysplasias Awareness Day on Saturday, February 20.

We encouraged our families to Rise Up for Rare by wearing blue and posting to social media. Here are some of the people who shared information on their Facebook to spread the word.

Julie Carroll, Ohio

“Ectodermal dysplasias are considered rare because they affect less than 200,000 in the U.S. And OODD, which is the subtype our Alex has, is even more rare. I can’t even find current data on it 🙁 Alex has a mutation in the WNT10A gene which encodes for proteins involved in proper functioning of the skin, hair, nails and teeth. Today, I rise up for Alex and….#RiseUp4Rare.”

Alexus Abney, Iowa

Alexus wore her unique hoodie to raise ectodermal dysplasia awareness. Her daughter, Lily, is affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome.

Jake and Amy Coleman, Kansas

These proud parents sported their blue in honor of their son, Jackson, who is affected by x-linked hypohidrotic ectodermal dysplasia (XLHED).

Denyse Shimchick, Illinois

Denyse posted a series of photos featuring her family affected by AEC syndrome. Her daughter, Danielle, snapped the great shots. Denyse and her three children, Dylan, Danielle and Delores are affected by AEC, as is her sister and nephew, Virginia and Zane Higgins.

Rich Klinger, Pennsylvania

Rich posted several photos of his son, Brayden, who is affected by hypohidrotic ectodermal dysplasia (HED). The pictures show Brayden’s love of motor sports and hunting, fishing.

Last Week to Rise Up For Rare

This week’s theme for Ectodermal Dysplasias Awareness Month is “Rise Up and Advocate.” Learn more about how you can take action this week to advocate for the Ensuring Lasting Smiles Act (ELSA).

The month will conclude on Saturday, February 28 which is Rare Disease Day. Families across the globe who are affected by any type of rare condition celebrate with a day of raising awareness. What can you do to participate?

Let’s finish this month by sharing information and advocating for our entire ectodermal dysplasias community!

Leave a Reply

Your email address will not be published.