Resources- Specific Diagnosis Card Catalog- Incontinentia Pigmenti
Synonym: Block-Siemens-Suizerger Syndrome
Who to Contact
Incontinentia Pigmenti International Foundation
30 East 72nd Street
New York, NY 10021
212 452-1231
212 452-1406 (fax)
E-mail: ipif@ipif.org
Web: http://imgen.bcm.tmc.edu/IPIF/
IPIF is a voluntary nonprofit organization founded in 1995. It is guided by a Scientific Advisory Council, whose members are acknowledged experts in their fields. IPIF consists of patients, physicians, educators, parents, relatives, and volunteers who are striving to take leadership in supporting research, education, and funding. IPIF is a source of reliable information and support for patients and families in the United States and worldwide. Its mission is to encourage and support research on IP, and to provide family support and education.
Where to go to Chat with Others?
HITS (UK)
Supports families affected by the rare neuro-cutaneous syndrome Hypomelanosis of Ito (also known as Incontinentia Pigmenti Achromians), IPA, Pigmentary Mosaicism, Ito's Syndrome and HMI. The hyperpigmentation or depigmentation of the skin markings associated with this syndrome usually follows along the lines of Blaschko. To become a member of the support group please email tgrant@hitsuk.freeserve.co.uk, giving your reasons for wanting to join us, thanks. We are currently supporting families in the UK and Ireland, Australia, Brazil, Canada, Cyprus, France, India, Italy, Malta, New Zealand, Spain and the USA.
Learn More About It
Incontinentia Pigmenti Information Page
From the National Institute of Neurological Disorders and Stroke
Incontinentia Pigmenti from Health Link
Incontinentia Pigmenti
from eMedicine
Links
National Incontinetia Pigmenti Foundation
The International Incontinetia Pigmenti Research Consortium
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