Our Mission

Our mission is to empower and connect people touched by ectodermal dysplasias through education, support, and research.

From the Executive Director

Dear families, friends and supporters,

At the National Foundation for Ectodermal Dysplasias (NFED), we believe in the power of togetherness for families facing the challenges of ectodermal dysplasias. Unlike many organizations focused on a single, rare disorder, we must take a broader approach.

We know that more than 50 different and complex conditions fall under the ectodermal dysplasias umbrella, each affecting families around the globe in unique ways.  

It’s true that this vast scope can be challenging. However, these challenges fuel our fire. With the unwavering passion of our donors, volunteers, and staff, there’s a collective desire to make a meaningful difference in the lives of individuals affected by ectodermal dysplasias.

In 2023, this passion translated into concrete action. We championed the Ensuring Lasting Smiles Act (ELSA), supported the Edelife Clinical Trial for x-linked hypohidrotic ectodermal dysplasia (XLHED), and brought families together at our annual Family Conference – just to mention only the top three highlights.

Mary with child affected by ectodermal dysplasia

But our greatest strength goes beyond specific programs. The NFED is steadfast in being a beacon of hope and a comprehensive resource connecting individuals, families, healthcare professionals, researchers, and legislators.

Because of so many of you, we are more than just an organization; we are an extended family. Thank you for supporting the ectodermal dysplasias community!

Mary Fete Signature

Year in Review

How have we been supporting the NFED family? Please take a look at our 2023 Impact Report for details of our critical work — with our families, researchers and scientists, advocates, and so many others helping shape and power our future.

Here’s what we accomplished in 2023.

  • We welcomed the 10,000th affected individual to the NFED family.
  • Thanks to the pioneering pre-natal research, six young boys affected by XLHED sweat normally, have had no respiratory illnesses, and have an increased number of permanent teeth.
  • Our network of Dental Treatment Centers across the U.S. helped us connect over 25 ectodermal dysplasias patients with dental experts.
  • We rallied support for ELSA with an Advocacy Day on Capitol Hill where we had representatives from 38 states and Washington D.C. Our community of 172 advocates represented 10 different congenital anomalies and attended 153 meetings with legislators.
  • Our Treatment Assistance Program (TAP) helped 7 families receive the treatment they needed.
  • We made strides in research to develop treatments and solve the mysteries of ectodermal dysplasias. Now, we better understand skin fragility, have more accurate prevalence numbers for many type of ectodermal dysplasias, and are studying a safer way to diagnose XLHED in babies before birth.

Financial Snapshot

2023 Operating Revenue was $1.66 million
2023 Operating Expenses were $1.09 million

Data is taken from our 2023 Audited Financial Statements.

Thanks for Your Support!

As we look to the future, we see success building on the horizon. With leadership from our Board of Directors, expertise from our Scientific Advisory Council and Patient Care Council, and support from our donors, the NFED will build on the successes of 2023. For 2024, we are working on expanding support to families, improving diagnoses, and identifying better treatments. For more details on what’s happening now, read our full Impact Report.

2 comments on “Our Impact Report – 2023”

  1. 1
    teasie witte on May 30, 2024

    Hello… We are in Charleston, South Carolina and our two boys are growing up into the need for prosthetics planning… Is there someone identified as yet near us that is already working in that area?

    1. 2
      Kelley Atchison on June 3, 2024

      Hi, Teasie. We are happy to assist you. Please contact our office at info@nfed.org or 6185662020. Thanks so much!
      ~Kelley Atchison
      NFED Director, Family and Community Programs

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