The Ectodermal Dysplasia Society (in England, it's international) 
www.ectodermaldysplasia.org

Baylor College of Medicine DNA Laboratory 
www.bcmgeneticlabs.org

The French Support Group
www.incontinentiapigmenti.fr

The Genetic Alliance
www.geneticalliance.org

The National Foundation for Ectodermal Dysplasias (NFED)
http://www.nfed.org

National Institutes of Health (NIH) for IP.
www.ninds.nih.gov/disorders/incontinentia_pigmenti/.htm

National Organization for Rare Disorders, Inc. (NORD)
www.rarediseases.org

The National Human Genome Research Institute
www.genome.gov/

US Department of Energy Human Genome Project Information
www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml

National Society of Genetic Counselors
www.nsgc.org