We know there’s a chance that you have never met another person affected by ectodermal dysplasias. We have created a support network of Family Liaisons to provide moral support, information and practical advice, guidance, education, resource information and increase awareness and events for individuals and families.
We encourage you to reach out to the Family Liaison either in your state or the same syndrome. Scroll down to view Liaisons by syndrome.
Contact a Family Liaison in the U.S.
Virginia Higgins
Lives in St. Peters, Missouri
Ann Geiger
Lives in Madisonville, Louisiana
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