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!
- Of the 100+ types of ectodermal dysplasias, there are 60 with genetic testing available. Enter our genetic test giveaway and explore diagnosis resources.
- Watch a recording of our Feb. 12th webinar to learn about filing dental claims with your health insurance.
- Celebrate International Ectodermal Dysplasias Awareness Day on Feb. 20th, including a Facebook Live video chat with NFED Executive Director Mary Fete.
- Finish strong with Rare Disease Day on Feb. 29th, when all types of rare disease organizations work to raise awareness.
- Download and share our printable flyer about the characteristics of ectodermal dysplasias.
- Stay connected throughout the month by checking our blog for the latest updates!
Join the Conversation
RISE UP to get results
Learn about the importance and challenge of getting a diagnosis.
RISE UP and raise funds
We support families throughout their lives. See how and help us grow!
RISE UP for research
Where are we on the path to improved treatments and finding a cure?
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.
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.
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
NFED offers a community of 8,600 families, care providers and volunteers that provide support and friendship. Join us and get connected.
Learn why the Ensuring Lasting Smiles Act is critical for families affected by ectodermal dysplasias and register as an advocate.
If you’ve seen our Stories of Hope, you know how powerful it can be to tell others about your experience with ectodermal dysplasias.
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 […]