Ectodermal dysplasias are rare genetic disorders that affect about 3 out of 10,000 babies. They cause the parts of the body like hair, teeth, nails, sweat glands and skin to develop and function abnormally. With more than 100+ different types of ectodermal dysplasias, it’s challenging for families to find answers and for healthcare professionals to offer treatments or cures. But that’s not stopping us!

During Ectodermal Dysplasias Awareness Month in February, we’re asking you to Rise Up for Rare. Spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.

HOW WILL YOU RISE UP FOR RARE?

Get Involved All Month Long

February is Ectodermal Dysplasias Awareness Month. Mark your calendar with important dates and actions to Rise Up for Rare!

Join the Conversation


Week 1
RISE UP to get results

Learn about the importance and challenge of getting a diagnosis.


Week 2
RISE UP and raise funds

We support families throughout their lives. See how and help us grow!


Week 3
RISE UP for research

Where are we on the path to improved treatments and finding a cure?


Week 4
RISE UP and register

Learn about the Ensuring Lasting Smiles Act and become an advocate.

Use #RiseUp4Rare to connect with us on social media throughout the month.

Illustration of person with DNA strand

Enter Our Free Genetic Test Giveaway

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 February 27th.

Review the rules and enter to win ›

Illustration of checklist on clipboard

Webinar: How to File Ectodermal Dysplasias Insurance Claims Like a Pro

On February 12th, we hosted a webinar to teach NFED families how to file claims for dental care to your health insurance. If you weren’t able to make it, you can now access a video recording in our library.

Watch the webinar recording ›

Illustration of blue t-shirt with social media "Like" icon

Go Blue on Social Media for Ectodermal Dysplasias

#RiseUp4Rare by updating your social media profiles for Ectodermal Dysplasias Awareness Month. We also want to see photos of you wearing blue on Feb. 20th for International Ectodermal Dysplasias Awareness Day!

TAKE ACTION TODAY

Become a Member

NFED offers a community of 8,600 families, care providers and volunteers that provide support and friendship. Join us and get connected.

Advocate for Smiles

Learn why the Ensuring Lasting Smiles Act is critical for families affected by ectodermal dysplasias and register as an advocate.

Share Your Story

If you’ve seen our Stories of Hope, you know how powerful it can be to tell others about your experience with ectodermal dysplasias.

Spread the Word

Educate your community by sharing facts, videos and resources about ectodermal dysplasias, either online or in-person.

YOUR SUPPORT MATTERS

“The NFED has provided us with an invaluable connection to a larger community, which has helped us to support Maddie as she learns to understand the challenges of her ectodermal dysplasia and to appreciate the ways that she is unique and special. The NFED has done so much for us.”

Jonathan Weil, “Marching On After Diagnosis”

Read Our Latest Updates

  • Debbie Reed is a passionate volunteer who celebrates Ectodermal Dysplasias Awareness Month every day in February. Learn what she does and why she does it.
  • The National Foundation for Ectodermal Dysplasias (NFED) has been celebrating Ectodermal Dysplasias Awareness Month throughout February and Rising Up for Rare! But today, 2-20-2020, we join with the ectodermal dysplasias support groups in other countries to celebrate the first International Ectodermal Dysplasias Awareness Day. We are very proud of our […]
  • Ectodermal dysplasias are genetic disorders that can be inherited from your parents or happen more spontaneously by changes (or mutations) in your genes before you’re born. They affect about three out of every 10,000 babies. But ectodermal dysplasias are much more than a hidden genetic issue. The disorders are characterized […]