What are we seeking to change?

The NFED is working for a future where…

  • Teeth are no longer viewed as cosmetic but as a human right – and insurance companies are required to provide dental treatment and surgery to those born with a congenital anomaly that necessitates dental surgery.
  • Young couples can plan a family and know there are many treatment options. The decisions will be theirs.
  • A child can spend a summer day outdoors with their friends without needing an emergency cooling plan.
  • Specific diagnosis and syndrome identification is a given – not a multi-year mystery.
  • There are effective treatment and cures available for all types of ectodermal dysplasias.

There are so many ways to create change

Every one of them involves you!

Together, we are the VOICES of ectodermal dysplasia. We are the many, many faces, races, cultures and ages – and when we bring together all our voices, we can make something remarkable happen!


I especially love using my voice to fight for research, for answers and for change for all of us with ectodermal dysplasia.

– Moe Rock, professional voice talent

If we don’t fight for research and a positive future for our children, who will?

We are asking you to support our efforts to help, to treat, to advocate and to cure. Your donation, in whatever amount works best for you, is the key to building a brighter future for every person struggling with an ectodermal dysplasia – and for those yet to be born.

The future is in our hands.

Your gift empowers us to become the change that a child somewhere is dreaming about right now.

Will you be the change… for yourself, for someone else, for everyone with ectodermal dysplasia?

What does change look like?


Passing the Ensuring Lasting Smiles Act (ELSA)
Life-Changing Treatments – Education
Breakthrough Research – Cooling & Dental Assistance


Change looks like YOU!

It’s time to make some noise. It’s time for a change! Please send your Gift of Change today – just mail, call or donate online.

Donate Now

Your VOICES gift will help the NFED fund education and treatment assistance programs, fuel life-changing research, power the ELSA advocacy campaign, and allow us to bring families and children together at our Family Conferences.

2 comments on “We are Determined to Be the VOICES of Change”

  1. 1
    Jessa on April 7, 2021

    This campaign, like so many NFED communications and events, seems to be aimed at parents of children affected by ectodermal dysplasia rather than those of us with the condition. Additionally, the focus on a “cure” suggests that there’s something wrong with us, rather than a variation in the human experience. I don’t want to be cured, I want a more accepting and accommodating world for how I am.

  2. 2
    Mary Fete on April 8, 2021

    Hi! Thank you so much for sharing your thoughts and opinions. I greatly appreciate it. With this campaign, we have also featured adults. Did you watch Moe’s fantastic video that jump started the campaign? Our mission is to empower and connect individuals through education, support and research. Our goal is to improve the quality of live for all individuals affected by ectodermal dysplasias and in some cases that means developing new treatments and cures. We also strive, through our educational efforts, to create an environment of acceptance and accommodation in our world.

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