Welcome to the NFED… You’re Not Alone!
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 40+ different types of ectodermal dysplasias, it’s challenging for families to find answers and for healthcare professionals to offer treatments or cures. But with the NFED, you’re not alone!
We celebrate Ectodermal Dysplasias Awareness Month each year in February. But 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.
We hope you will join us all month as we celebrate ectodermal dysplasias and YOU! There are a couple of important days to mark on your calendar.
February 1: Kick Off Ectodermal Dysplasias Awareness Month
Join us on February 1 by posting to social media to let the world know that you will be celebrating Ectodermal Dysplasias Awareness Month (EDAM) with the NFED. We’ve even created graphics you can use with your posts. Download the graphics below to use on as your profile photo!
February 20 is International Ectodermal Dysplasias Awareness Day
Join us on Tuesday, February 20 by going blue and sharing your smile on social media to celebrate International Ectodermal Dysplasias Awareness Day. Wear blue, take a picture and post it to social media to join people around the world raising awareness for ectodermal dysplasias. Be sure to tag the NFED in your post!
Show your support for the NFED and all those living with and caring for someone with ectodermal dysplasias.
February 29 is World Rare Disease Day
For the NFED February may be dedicated to ectodermal dysplasias, but our understanding of “rare” stretches far beyond a single month. Like a hidden date appearing only every four years, February 29th serves as a powerful reminder of the 300 million individuals worldwide living with rare diseases. For them, and their families, every day is a unique journey. This leap year, let’s join hands with our brothers and sisters in the rare community. Let’s raise awareness, advocate for change, and celebrate the extraordinary strength that comes with navigating the path less traveled. Together, we can amplify the voices of millions, paving the way for a future where “rare” doesn’t mean invisible. Take action, share resources from sister organizations, and spread the word. Let’s make 2024 a year where the light of hope shines brighter than ever for every individual living with a rare disease.
Ways You Can Raise Awareness
Share Your Rare
One of the greatest things about the NFED is the support members give and receive from one another. One way to support your fellow members is to share your story. We often hear how our members’ stories are inspirational to others who are affected by ectodermal dysplasias and reminds them that they are not alone. Click the button below to share your story.
Spread the Word: Potential Treatment for XLHED
For 30+ years, the NFED has led the XLHED research, which has brought us to this potential treatment that is currently in clinical trial. The EDELIFE clinical trial’s purpose is to confirm the safety and efficacy of a potential prenatal treatment that has previously been shown to improve XLHED symptoms. If you or a family member are, or could be, affected by XLHED, you will want to learn more—click the button below!
Don’t Miss a Thing: Update Your NFED Profile
Have you moved, changed jobs or just gotten a new email address? Update your profile with your latest contact information so you don’t miss important news and announcements!
Not a member? When you join us, you are more than a member, you are a part of the NFED family!
Help Us Raise Awareness and Funds
EDAM is the perfect time to organize your own event to raise awareness about ectodermal dysplasias and funding to support our mission!
It can be as simple as starting a Facebook fundraiser supporting the NFED this month. Or, planning a 5K run/walk in the future with proceeds benefitting our mission. There are lots of great ways, big and small, to raise funds and awareness. Click the button below to learn more!
Connect with us on social media for opportunities to raise awareness throughout the year.
TAKE ACTION TODAY
NFED offers a community of 10,200 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.
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
Coming Soon: 14 Things You Didn’t Know About Ectodermal Dysplasias Check out some interesting facts to share during Ectodermal Dysplasias Awareness Month!