For Ectodermal Dysplasias Awareness Month in February, we’ve asked the NFED community to “Rise Up for Rare” by educating others, volunteering, advocating and fundraising. And when it came to our first International Ectodermal Dysplasias Awareness Day on February 20, our families really delivered!

Check out the highlights from this special day and find out how you can still get involved before the end of the month.

Community, Coast to Coast

To kick off International Ectodermal Dysplasias Awareness Day, we asked our social media followers to wear blue and share photos of their hometown celebrations. In addition to the posts below, see all of the community’s submissions in our Facebook post.

The Kemper Family (Canada)

Addison Kemper’s daughter, Pippa, wore blue hair to school! Both Addison and Pippa are affected by Clouston syndrome and have shared their story with NFED.

Ward & Steele Families (Iowa)

According to Jen Steele, the Ward and Steele families decided to celebrate the day by getting the families together for dinner—capping off months of advocating for ELSA together.

Terri Andrews (Alabama)

Terri has been a part of the NFED community for many years and previously shared her story about working as a nurse with EEC syndrome. This year, she posted a pic as part of a fundraiser for NFED!

Ashley Turner (Connecticut)

Ashley got into the NFED spirit by sharing her photo and thanking the people in her life who have taken the time to learn about ectodermal dysplasias and wear blue along with her.

Kelly Koch (Canada)

Kelly introduced us to her daughter, Clara, on their first International Ectodermal Dysplasias Awareness Day in British Columbia. Stay tuned for their upcoming Story of Hope!

Gina Beverlin (Kansas)

We all know how important it is to have family support and encouragement. In honor of her grandson, Jackson, Gina wore blue to work on Awareness Day.

A Special NFED Announcement

Did you tune in to our Facebook Live video? Jodi Edgar Reinhardt, NFED’s Director of Marketing and Communications, gave a warm welcome to our online community and a shoutout to our friends and families in 25 ectodermal dysplasia support groups and 80+ countries. 

Jodi also encouraged everyone to continue to raise awareness on social media, start or contribute to a Facebook Fundraiser, and participate in our genetic test giveaway!

Genetic Test Giveaway Ends Feb. 27

Thanks to GeneDx, we’re giving away 5 free genetic tests for Ectodermal Dysplasias Awareness Month. Get on the path to a diagnosis when you enter the giveaway by 11:59 p.m. CT on Thursday, February 27, 2020.

You Can Still Rise Up for Rare!

Help us finish strong for Awareness Month by celebrating Rare Disease Day on Saturday, February 29. Join in as rare disease organizations around the world host events and put the spotlight on the 300 million people affected by a wide range of rare conditions.

Thank you again to all of our friends, families and supporters who participated in the first International Ectodermal Dysplasias Awareness Day. We’ve been so excited to see people rise up for rare that we’re practically floating on air over here!

2 comments on “NFED Families Rise Up for the First International Awareness Day”

  1. 1
    Jennifer Van Domelen on March 24, 2020

    Is there a specific awareness day for ED or are we sharing it on Feb 29?

    1. 2
      Jodi Edgar Reinhardt on March 25, 2020

      Hi, Jennifer. We celebrate throughout the month of February, Ectodermal Dysplasias Awareness Month. This year, for the first time, along with the other ectodermal dysplasias support groups around the world, we celebrated on 2.20.2020, International Ectodermal Dysplasias Day. The last day of February is Rare Disease Day. It can be confusing, right? Thanks for the question! ~ Jodi, NFED, Director, Marketing and Communications

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