below is  contact information to help you with your Ijourney. 

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.
10021 U.S.A.


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.

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