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A Campaign for Ectodermal Dysplasias Research

Ectodermal dysplasias are rare and not at the forefront of researchers’ minds. For our families to have better treatments and ultimately, cures, the NFED must continue to be the catalyst.

Randi and Weston GrayThe Time to Act Is Now

Today, we stand at an unprecedented time in history. New research findings show that a prenatal treatment restored sweating in the most common type of ectodermal dysplasia. It also corrected several other symptoms. It’s extraordinary! But without funding, this research study and others will not continue.

Support Research


Campaign Components

  • Fund research to develop EDI200 as a treatment in utero for XLHED – $50,000
  • Fund the follow-up research for the Newborn XLHED Clinical Trial – $25,000
  • Fund all follow-up research for the XLHED Natural History Project began by Edimer Pharmaceuticals – $25,000
  • Fund research for p63 syndromes exploring treatment protocols for skin erosion and vision loss – $50,000
  • Grant seed funds for # new research projects dedicated to specific syndromes – $75,000
  • Fund the International Ectodermal Dysplasias Classification Project – $75,000

To learn more about each research project and how it’s helping us move closer to a cure, check out our research campaign brochure.

Download the Brochure


Randi and Weston GrayMaking Your Gift. Making History.

Here’s your opportunity to be heroic. Join us in blazing the trail for ectodermal dysplasias research that leads to better treatments – and cures! Make a gift that is best suited for you. You might consider a pledge that you can pay over three years.

Donor Recognition Levels

$50K and Up
President’s Society

$24K – $49,999
Leadership’s Society

$10K – $23,999
Society of Friends

$5,000 – $9,999

$1,000 – $4,999

$500 – $999

$100 – $499

$99 and Under


Make Your Pledge or Donation

Donations to the NFED are eligible for tax deductions to the limit allowable by the law. We are a 501c3 nonprofit organization. Our tax identification number is 37-1112496.

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