Ever wonder how life might be different?
Just 40 years ago, individuals and families affected by ectodermal dysplasias didn’t have a trusted place to turn when they received this rare diagnosis.
On December 24, 1981 everything changed…
Due to the passion and dedication of a dozen families, the National Foundation for Ectodermal Dysplasias (NFED) was born. Now, 40 years later, we are recognized as the worldwide expert and leading provider of research, education, advocacy and support for ALL affected by ectodermal dysplasias.
YOU are why we’ve come so far!
Thanks to your dedication and trust, the NFED has:
- Helped classify more than 100 forms of ectodermal dysplasias.
- Explored advanced research and treatment approaches to many of the associated skin, dental and sweating issues.
- Supported studies into a promising, in-utero therapy that has been shown to restore sweat function and increase tooth bud and other cell development in X-linked hypohidrotic ectodermal dysplasia (XLHED).
- Hosted groundbreaking scientific conferences that have spurred major advancements in research and treatment.
- Held national family conferences dedicated to teaching and connecting our families with each other and with key medical resources.
- Got the Ensuring Lasting Smiles Act (ELSA)—a bill that will close health insurance loopholes that prevent individuals born with congenital anomalies from getting coverage for medically necessary treatments and procedures—passed in the U.S. House of Representatives just this week!
It’s always great to speak with a member of the NFED. I always come away feeling less fearful and more empowered and confident when facing a new challenge.”
Jamie Turlington, NFED Member
Help us build a future of hope…
With you at our side, we will continue to build on 40 years of success and achieve even greater impact for families affected by ectodermal dysplasias in the next 40 years and beyond. This year, we plan to:
- Fund over $200,000 in research.
- Grow our community to help even more understand their diagnosis and treatment options.
- Bring individuals and families together to share their stories and ideas at our 2022 Family Conference, where we will celebrate our 40th Anniversary.
- Increase need-based financial assistance through the Treatment Assistance Program to help with the cost of dentures, wigs, air conditioners, cooling vests and genetic testing.
- Get ELSA passed in the Senate and then into law. We have until January 3, 2023 to get this critical legislation passed—2022 is our year to make it happen!
Big dreams require big dreamers!
Our financial goal is just as ambitious as our achievement plans. During our 40th Anniversary Year, the NFED needs to raise an additional $250,000 to reach our goals.
Will you consider a 2022 Anniversary Year sponsorship or donation to help us reach our shared goals? Support, sponsor & learn more about NFED’s 2022 40th Anniversary Year.
Our child has EEC [ectrodactyly-ectodermal dysplasia-clefting syndrome] and you guys gave us the support we needed when we needed it most. When Greta was young NFED paid for her to have a dental surgery. We wanted to pay it forward, even if it is just a little bit at a time.”
James & Ann Geiger, NFED Member
Together, let’s reach for the stars!
On behalf of the National Foundation for Ectodermal Dysplasias, and the thousands of children and families we help every day, THANK YOU for partnering with us in our life-changing mission. Learn how you can support the NFED’s 2022 40th Anniversary Celebration. Questions? Please email us at info@nfed.org, or call our office at 618-566-2020.
Join us at our 2022 Family Conference and 40th Anniversary Celebration
July 14-16, 2022 in St. Louis, MO at the Double Tree by Hilton, Chesterfield