National Foundation for Ectodermal Dysplasias

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

CALL US AT (618) 566-2020

We're here to help

News & Events

Latest News Upcoming Events

XLHED Women’s Forum

Family Conference is Full

Why You Should Care About the XLHED Research Study

Seth Ferris Joins NFED Staff

Ectodermal Dysplasias Awareness Month

Apology Response Open Letter to Mr. Shaquille O’Neal

Open Letter to Mr. Shaquille O’Neal

Welcome Kim Hardin as Pennsylvania Liaison

XLHED Research Progress - Front Page News

Third Family Participates in XLHED Clinical Trial

Joliet Woman’s Group Starts Scholarship to Help Families Affected by Goltz Syndrome

Edimer Enrolling Patients in XLHED Newborn Study

Rare Disease Day 2014

New Executive Director Named

Holiday Message from the NFED

Long-Time Board Member Dies After Battle With Cancer

The Amazing Norma and Her EEC Story

2014 National Family Conference

Fall Educator Is Now Online

NFED Founder’s Reaction to EDI200 Clinical Trial

First Baby Dosed in Clinical Trial for XLHED

Message from the Board President

Professional Soccer Coach Motivates Kids Affected by Ectodermal Dysplasias

Join the NFED’s Monthly Giving Program

Send a Kid to Camp

2012 Annual Report: Compassion in Action

Helping Hands

XLHED Newborn Study is Starting Now

Don’t Sweat It Walk - Fairview Heights, IL

Survey Results are In

Don’t Sweat It Walks 2013

The Spring 2013 Educator is Now Available

Celebrating Our New Home With Open House

Wusstig Joins Staff

Ojai Mother Wants to Raise Awareness of Hay-Wells Syndrome

Camp Discovery 2013

The NFED is Moving Its Headquarters

Donate to NFED Through the CFC

Clients With Cleft Issues in Massachusetts Benefit from New Law

Beverly Meier Retires After 31 Years

Adults Affected by X-Linked HED Needed for Study

Cooling Tips

“Blues for a Cure” in the news

Historic Bethel German Colony site of “Don’t Sweat It Walk”

2011 Annual Report

Hartland Community Rallies Around Baby Battling Rare Skin Disorder

Edimer Receives Fast Track Designation for EDI200

Bullskin Toddler Suffers from Ectodermal Dysplasias

Parenting Survey

Straumann Raises Awareness of NFED

Remembering Reverend Charles J. Sheffield

Zach Hamm’s Don’t Sweat It Golf Classic

2012 Family Conference Registration Brochure Now Available

Watch Video of Owen McCulloch

Connecting Lives: 30 Years of Research Success

Are Neti-Pots Safe to Use?

Smyrna Girl Rides in Parade to Raise Awareness for Genetic Disorder

2012 National Family Conference

Photos from the 11th Annual Halloween Bash

Use What You Got

Rapp Hodgkin and Hay Wells: The Same Disorder?

Bruno’s Golf Outing

Irving Man Can’t Sweat, But It’s Cool By Him

Welcome Judy Blase Woodruff as Our New Executive Director

The NFED’s 30th Anniversary Gala - Photos

Arizona’s Radley Forced To Sweat Another Way

Mississippi Regional Family Conference

XLHED Carrier Study

2011 National Family Conference - Photos and Media Links

Little boy defies doctors, beats the odds

2010 Annual Report

Males Affected by XLHED Needed for Research Study at UCSF

Founder and Executive Director Retires

10th Annual Rally for Ally

XLHED Women’s Forum

Family Conference - July 23rd

Family Conference - July 24th

Family Conference - July 25th

Family Conference - July 26th

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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360