A Campaign for Ectodermal Dysplasias Research

$100 Raised of $100,000 Goal

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Come MARCH With Us

We’re Making Footprints in the World of Ectodermal Dysplasias

Even the tallest mountains can be scaled with enough small but purposeful forward steps. Join us on our Forever Forward march! There are so many hills we want to climb – and with you at our side, we can. Together, we will minimize the dramatic effects of ectodermal dysplasias, search for cures, and help parents and children proudly —

Say “Yes!” to a future free of fear and filled with confidence and hope.

Why Do We Climb?

To Reach Our Hopes & Dreams!

What do you hope and dream for? Is it healthy eyes, an end to skin lesions, the ability to spend an entire day in the hot sun with your friends and family, a full head of hair, the knowledge that your children – and their children – will not worry about their syndrome every single day?

What does it take to achieve a breakthrough? The answer is simple…it takes you!

Support Research

Please walk beside us by supporting ectodermal dysplasia research. When you help us reach our $100,000 Forever Forward research goal, you will enable us to provide better treatments, hope for individuals and families, and a path toward cures.

You can help make someone’s hopes come true with your research gift!

$100 – Stipend for genetic testing to help us better understand the rarest, unknown syndromes

$250 – One genetic lab screen

$1,000 – One full genome panel for an individual with an unknown form of ectodermal dysplasia

$5,000 – Support for the Ectodermal Dysplasias International Registry

$10,000 – Major sponsor for the 2021 Research Conference (and join us there!)

$25,000 – Seed grant to one promising researcher (this is how we discovered a synthetic version of the missing pre-natal XLHED protein)

It’s so easy to make a dream come true:

  • Donate.
  • Mail in your gift to our office at the address below.
  • Phone us at 618-566-2020.

Thank you for being on the NFED Dream Team!

To learn more about what the NFED has achieved with your help – and where we are headed – check out our research brochure.

Will You March With Us?

We can only climb with you at our side. Your research gift, of whatever amount is good for you and for those you are marching for, might be the key that inspires our very next breakthrough!


All Forever Forward gifts will help the NFED fund more research projects, identify effective treatments, pursue potential cures, support clinical trials, and continue to expand the understanding of ectodermal dysplasias, including research conferences.

The National Foundation for Ectodermal Dysplasias is a 501(c)(3) nonprofit.

Donations made to the NFED are tax deductible to the extent allowable by the law.

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