Connect With Our Community

Information and support are important to managing ectodermal dysplasias. Who better to share your challenges and triumphs than with a group who understands what it is really like to live with ectodermal dysplasia? To help you build a strong support network, we have many ways for you to connect with our ectodermal dysplasias community.

The connections we have made via NFED are so amazing.  I received a message from a mom telling me how much we have helped her family and how her daughter looks up to our daughter, yet we have never met in person. – Jenny 

Connect with Us

We have vital information to share with you. Our staff can listen and help you. We can also connect you with other families from your area, with your syndrome, or who have experienced similar issues.

Request a Contact List of Affected Individuals in Your Area

An adult affected by ectodermal dysplasia or the parent of an affected child can request a contact list of families in their state or with their syndrome. First, you must join the NFED. Second, you must give permission to be included in the contact list in order to receive one. Request a list now.

Contact the Family Liaison for Your Region

Families often want to talk to others who have “been there, done that.” Adults with ectodermal dysplasia and parents of affected children are just the people for the job. They volunteer as trained family liaisons and will listen, share their experiences, offer support, and discuss helpful NFED resources.

Virginia Higgins

Lives in St. Peters, Missouri

Ann Geiger

Lives in Madisonville, Louisianna

Jack Kriz

Lives in Newberg, Oregon

Kristin Matus-Kelso

Lives in Burke, Virginia

Marc Steingesser

Lives in Aurora, Colorado

DeAnn Wohlgemuth

Lives in Hesston, Kansas

Rachel Buerman

Lives in Minneapolis, Minnesota

Sue Kluzek

Lives in Seneca, Illinois

Sam Hicks

Lives in Boise, Idaho

Janet Johnson

Lives in Salt Lake City, Utah

Beth Orchard

Lives in West Chicago, Illinios

Jill Radley

Lives in Thatcher, Arizona

Randi Walker

Lives in Bay City, Texas

Lucy Davies

Lives in Baltimore, Maryland

Jessica Sansone

Lives in Massapequa Park, New York

Join Our Private Facebook Groups

Ask questions. Share thoughts. Join the conversation online. We have our main Facebook page and several private groups. For the private groups, we restrict group memberships to the intended audience. Also, we ask that you register with us to gain entrance to the group. Join today! Do you have an idea for a group you would like us to have? Let us know.