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National Foundation for Ectodermal Dysplasias
Information about the various types of ectodermal dysplasias, family support programs and current research projects.
National Organization of Rare Disorders
Nice general reference for concise information.
Langer-Giedion Syndrome Association
FAQ’s about the disease and the story of a patient and how her and her family have dealt with this disease.
The Gaps Index
Information about all three of the types of Trichorhinophalangeal Syndrome with a number of helpful links for more information.
Little People of America (LPA)
Nonprofit organization that provides support and information
International Skeletal Dysplasia Registry
International registry that can help track and provide information for patients.