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.
IPIF MISSION
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 Support
It 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:
Newsletters to keep patients and their families informed.
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.
Website on the internet.
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.
Education
Provide the medical care community with relevant medical information on IP to encourage early diagnosis.
Create awareness of IP on a worldwide basis.
Bibliography of articles written about IP for medical journals. Articles are available at no charge.
Provide the medical care community with relevant medical information to enable accurate diagnoses and appropriate treatment.
Create awareness of IP on a worldwide basis. Maintain a bibliography of articles written about IP for medical journals. A list of the articles is available on the web site. Articles are available, at no charge, to members of IPIF and their medical providers.
PIF is a member of the following organizations:
Genetic Alliance
American Self-Help Clearinghouse
The Genome Action Coalition
National Organization of Rare Disorders, Inc. (NORD)
Federal Legislation
IPIF cosponsors legislation affecting those with orphan disease. |
