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!
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.
JOIN US NOW & IN THE FUTURE!
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 March 30, 2022, we’ll work together to educate legislators and ask them to co-sponsor the bill and help move it through Congress. If we don’t get ELSA passed in 2022, all of our hard work over the past few years will be lost. We need your help, NOW!
Spread the Word About An Exciting Clinical Trial for XLHED
For 30+ years, the NFED has led the XLHED research which has brought us to this pivotal clinical trial. The EspeRare Foundation and Pierre Fabre Group announced the start of the EDELIFE clinical trial for x-linked hypohidrotic ectodermal dysplasia (XLHED). The trial’s purpose is to confirm the safety and efficacy of ER-004, which is a prenatal treatment that improves XLHED symptoms.
Not a Member? Join Us!
Help us reach our goal of welcoming 40 new members this February, in honor of our 40th Anniversary. When you join us, you are more than a member, you are a part of the NFED family!
Already a member? Update your profile with your latest contact information to get direct access to conference workshop videos.
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!
Remember, the “i”s in fundraising stand for innovation and inspiration, NOT impossible. To help us meet our goal of raising $14,000 this month, you can set up a Facebook fundraiser or hold a small fundraising event benefiting the NFED. Because fundraising builds possibilities out of generosity!
Connect with us on social media for opportunities to raise awareness throughout the year.
TAKE ACTION TODAY
NFED offers a community of 9,200 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
Awareness. Advocacy. Action. February is upon us, and the National Foundation for Ectodermal Dysplasias (NFED) has a lot going on!
14 Things You Didn’t Know About Ectodermal Dysplasias Check out some interesting facts to share during Ectodermal Dysplasias Awareness Month!