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.

Rise up for rare

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!

  • Get your hands on NFED merch and help spread awareness by sporting your new purchase this month.
  • Register for the Upcoming Webinar on Feb. 9th to learn about dental treatment options for adults.
  • Celebrate International Ectodermal Dysplasias Awareness Day on Feb. 20th. Don’t forget to wear blue and share in the fun on social media.
  • Finish strong with Rare Disease Day on Feb. 28th, when all types of rare disease organizations work to raise awareness.
  • Stay connected throughout the month by checking our blog for the latest updates!

Join the Conversation

  • Week 1 – Rise up for research
    • Where are we on the path to improved treatments and finding a cure?
  • Week 2 – Rise up and reach out
    • Show us how you rise up! How will you spread awareness for ectodermal dysplasias?
  • Week 3 – Rise up and recognize caregivers
    • Share and listen to caregiver stories. Celebrate those helping others lead happy and healthy lives.
  • Week 4 – Rise up for rare
    • Learn about the Ensuring Lasting Smiles Act and become an advocate for change.

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

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Social Media Resources

Pre-Written Posts

  • This month, I #RiseUp4Rare! Awareness is the first step in individuals learning more about ectodermal dysplasia. Will you join me? For more information, visit nfed.org/rise
  • I’m joining the NFED in spreading awareness about ectodermal dysplasias! Let’s continue to #RiseUp4Rare during February. Get involved at nfed.org/rise

Download a full list of template posts for Awareness Month.

Register for Virtual Advocacy Day

Join us in advocacy as we continue to fight to get the Ensuring Lasting Smiles Act (ELSA) passed in this session of the U.S. Congress. On April 28th, we’ll hit the phones together to educate legislators and ask them to co-sponsor the bill and help move it through Congress.

See the details and register

Webinar: Dental Treatment Options for Adults

Register for our upcoming webinar on February 9th at 7 pm Central and learn about dental treatment options for adults with ectodermal dysplasias. Can’t make it? A recording will be available to all registrants for seven days following the webinar.

Save your virtual seat

You can also check out our full lineup of Conference from Your Couch webinars during 2021.

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 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.

YOUR SUPPORT MATTERS

“I am so grateful the NFED was there for us!” Kathy said. “They provided us with a wealth of information not available anywhere else. They provided hope for us for Olivia’s health and future and a sense of relief that we didn’t have to face this alone.”

Kathy Daniel, “The Amazing Power of Hope”

Read Awareness Month News