Updated on Nov. 1, 2023

This is our 20th year celebrating Ectodermal Dysplasias Awareness Month (EDAM)! The National Foundation for Ectodermal Dysplasias (NFED) created the first campaign in 2004 with the intent to come together as a community and let others know about these rare conditions and our important work. And the campaigns have been a great success! We have rallied together to heighten people’s understanding and did it in lots of fun ways. Celebrating each of you is what we do all year, but it’s especially fun each February when we all band together.  

When new families contact the NFED, they almost all say how relieved they are to find an organization and others who are like them who care. This sentiment helped inspire our theme for this year’s Awareness Month: “You Are Not Alone.”

Our NFED family can be found in 90+ countries around the world. We are now 9,976 (we should hit 10,000 next month!) families strong and rising. As a member of this caring NFED community, you know you are never alone. But, despite our growing numbers, there are still thousands around the world who are affected by ectodermal dysplasias and haven’t found the NFED yet. They may not even have a diagnosis yet or know where to turn for help. Help us change that.

How You Can Jump In to Help

We have lots of fun things planned for the month that you won’t want to miss.

To find resources, graphics and other activities, head to our landing page dedicated to Ectodermal Dysplasias Awareness Month.

Watch and Share Our New Video

To kick off the month, we are launching our new video about ectodermal dysplasias and the NFED’s work! It’s a wonderful video showcasing many of you that we filmed at the 2022 Family Conference. Please share the link to the video with your family and friends and/or share it via social media with your entire network. Let’s see how many views we can get in February! You never know who may see it and realize they have somewhere to turn.

Update Your NFED Profile

Have you moved or changed jobs and have a new email address? Let us know! Update your profile today to make sure you receive important announcements and exciting news from the NFED.

Not already a member? Become one today!

Update Your Profile

Download our revamped “Family Guide to the Ectodermal Dysplasias.”

This comprehensive resource is filled with useful information that you will want to share with extended family, teachers, school nurses and your doctors. Our Scientific Advisory Council recently updated it to include the most up-to-date information.

Download Family Guide to the Ectodermal Dysplasias

Share Your Rare!

You are the best one to tell your “you-nique” story. You could submit your amazing ectodermal dysplasia story to our Stories of Hope blog. Maybe your son got his new dentures this year and you want to show his wonderful new smile. Are you battling insurance? Talk about the challenges you face to get benefits. Are you affected by ectrodactyly? You could share a story about how you adapt to having less fingers to still do all the things you want to do. You have an interesting story and people would enjoy hearing it!

Friday Fun Facts

Test your ectodermal dysplasias knowledge each week by heading to our social media channels. Then, share the post to your own social media to spread the word. You could explain how the information in the post applies to your family to make it personal. People often want to know more, but are not sure how to ask. Empower yourself to tell them!

If you don’t want to wait till Fridays, you can always grab all kinds of facts from the NFED website. Debbie Reed is an NFED mom and grandma from Texas. For many years, she posted every single day in February about EDAM! She shared photos, stories, facts, or words of thanks. By doing this, it helped her friends understand her family’s ectodermal dysplasia journey and helped her by creating an even stronger support network. 

Go Blue & Share a Smile for International Ectodermal Dysplasias Awareness Day

Pippa celebrated with blue hair!

Each year, we join other ectodermal dysplasias organizations around the world for this special one-day celebration. The NFED participates by asking everyone in our community to wear blue! Head to the NFED store to order your shirt, hoodie or hat. Or, maybe mimic the adorable Pippa who dyed her hair blue one year for this day! Get your friends, family or even co-workers to join in the fun by wearing blue, too . Be sure to share your smile with us! Snap a picture of you, post it to social and tag the NFED. We want to see a blue-out!

Grab Your NFED Merch

Find Fun Ways to Raise Money & Support the NFED

EDAM is a great time to raise money, too. You will find that once your people start learning more, they often want to help. Maybe you could partner with another NFED family in your area and do a fundraiser together like the Nelsons and the Nawrockis do with the NFED Minnetonka 5k each year. Last week, we shared ideas on fun ways to fundraise and offered toolkits to get you started.

Get Fun Raising Ideas

We’re Here to Help

What other ideas do you have? You are certainly not limited to these. Does your local junior college have a dental hygienist program? The Steele family from Iowa does. Jen and Alli Steele have gone a few years to a class to educate the students about ectodermal dysplasias. (Read what Alli—then 10—wanted her dental hygienists to know.) What if you read our children’s book, Lionel Learns What Matters Most to your daughter’s kindergarten class? Could your child speak to their class? That’s what Josh did in fifth grade to help his classmates understand why he is unique and special. The kids loved it and were glad to learn more about him. It gave him confidence!

Josh raised awareness in the classroom!

Whether you choose to have a bake sale, speak at your church, or have an article in the local newspaper, we’d love to hear about what you are doing. Tell us in the comments below!

If you need help with ideas or information to share, contact our staff at info@nfed.org. She’d love to connect with you and assist!

You Have the Power To Educate

Let’s work together this February. Speak out and help us remove any stigma about differences. Let’s spread the word to create a world where no one affected by ectodermal dysplasias is ever alone. Have a great Ectodermal Dysplasias Awareness Month. We look forward to celebrating YOU!

Get Ready for Ectodermal Dysplasias Awareness Month

Leave a Reply

Your email address will not be published. Required fields are marked *