During Ectodermal Dysplasias Awareness Month each February, we ask you to Rise Up for Rare.

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!

No matter the time of year, you can spread the word about these rare conditions and join us in raising up this incredible community through research, advocacy and more.


Become a Member

NFED offers a community of 9,000 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.


“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 Awareness Month News

  • For the first International Ectodermal Dysplasias Awareness Day, families, friends and supporters in our global network showed up to celebrate.
  • 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 […]