below is contact information to help you with your IP journey.
PIF official website
Susanne Bross Emmerich
Founder and Executive Director of ipif - Incontinentia Pigmenti International Foundation
Tel: 212 452-1231
Fax: 212 452-1406
Please make all Donations to -
ipif - Incontinentia Pigmenti International Foundation
Mailing Address -
30 East 72nd St,
New York, N.Y.
National Society of Genetic Counselors
Baylor College of Medicine DNA Laboratory
The Genetic Alliance
The Ectodermal Dysplasia Society (in England, it's international)
The National Foundation for Ectodermal Dysplasias (NFED)
National Institutes of Health (NIH) for IP.
National Organization for Rare Disorders, Inc. (NORD)
The National Human Genome Research Institute
US Department of Energy Human Genome Project Information
The French Support Group
*The ABOVE list was supplied by ipif and all Links are reliable sources
You can also find help here.