Incontinentia Pigmenti International Foundation

Research IPIF was responsible for creating the International IP Research Consortium which consisted of 5 laboratories in 5 countries that collaborated in the effort to isolate the IP gene. IPIF paid the salaries of some of the researchers, and provided funds for members of the consortium to attend meetings. Equally important was identifying individuals and families for participation in molecular studies of this disorder, both multigenerational families and those with unknown mutations. Devise an accurate and safe prenatal diagnostic test. Develop a database to assess more accurately clinical variation, natural history, and prognostic indicators. Identify additional mutations which cause IP Study treatment modalities. Understand related anomalies, particularly in males. Animal models of IP already exist, transgenic mice are fomenting studies of the gene's lethality and the expressivity of the disease. The researchers are now better able to study treatment modalities. Family SupportIt can be a devastating experience for parents to be told that their baby has IP. When a child has a rare disease, close personal contact among families and friends can provide emotional support and lessen the feeling of isolation.IPIF supports individuals and families through: Multi-lingual Web site to keep patients and their families informed of new developments. National database of health professionals, with expertise in IP, to help direct individuals to appropriate medical resources and consultants. Emotional support and the sharing of resources. Access to other families and patients via the web site. Keeping Families updated with Current News via social mediaEducation Provide the medical care community with relevant medical information to enable accurate diagnoses and appropriate treatment. Create awareness of IP on a worldwide basis. Provide the medical care community with relevant medical information to enable accurate diagnoses and appropriate treatment. Maintain a bibliography of articles written about IP for medical journals. A list of the articles are available on the web site. Articles are available, at no charge, to members of IPIF and their medical providers.