Are you ready to Rise up for Rare this month?
We sure are!

Today kicks off Ectodermal Dysplasias Awareness Month! This annual campaign gives us the opportunity to come together to celebrate our ectodermal dysplasias community, which is 9,000 families strong and growing.

We invite you to join with our families around the world to raise awareness and share your story. Each week will have a different theme and fun ways for you to get involved.

You can check out our plans on the Ectodermal Dysplasias Awareness Month page and read updates throughout the month on our blog. You will receive an email each Monday with information, resources and prompts.

Here are some of the highlights you won’t want to miss:

  • Get Your NFED Merch! – We have launched a new store for you to get your Rise Up for Rare NFED gear. Order your apparel today so you’ll be ready to wear your blue for International Ectodermal Dysplasias Awareness Day on February 20. From shirts and hoodies to stickers and water bottles, there’s a little something for everyone to show their NFED pride!
  • Educate Yourself About Dental Treatment Options for Adults – Sign up for our interactive webinar on Feb. 9 with the internationally renowned, Dr. Clark Stanford.
  • Celebrate Your Caregivers – What person has made your journey with ectodermal dysplasia an easier one? Is there a doctor, dentist or other care giver would you want to give a shout out to? We’d love to include your care provider and why you like him or her in an upcoming blog. Tell us by filling out the Share Your Story form today!
  • Join the Conversation – You have a powerful story to tell – yours! Social media makes it super easy to reach a large audience. You will find that your families and friends are interested in learning and are also your biggest supporters and cheerleaders. You can share your experience of ectodermal dysplasia along with facts and resources that we provide.

The 100+ ectodermal dysplasias are complex and challenging. After 40 years, we keep learning more all of the time. You can help others learn, too, by sharing one of these graphics along with information about your experience.

Facebook Graphics

You can also spread the word by sharing our posts from our Facebook, Instagram and Twitter platforms. Use the hashtag – #RiseUp4Rare.

It’s going to be a fun month and we can’t wait to see how you are going to Rise Up! Let’s tell the world about ectodermal dysplasias and the incredible people it affects.

2 comments on “It’s Time to Rise Up for Rare!”

  1. 1
    Connie Anderson on February 1, 2021

    My son, a classic X-linked ED sufferer, is 39 and has already had to have MANY skin cancers removed from his head, neck and arms and hands. Is this common?

    1. 2
      Kelley Atchison on February 2, 2021

      Hi, Connie. There is not a known correlation between skin cancer and XLHED.

Leave a Reply

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