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.
Research Goals
IPIF is responsible for creating the International IP Research Consortium consisting of 6 laboratories in 5 countries that have collaborated in the effort to isolate the IP gene. IPIF pays the salaries of some of the researchers, and provides funds for members of the consortium to attend meetings. Second, and equally important is identifying individuals and families for participation in molecular studies of this disorder, both multigenerational families and those with new mutations.
IPIF has supported
research to map and identify the IP gene.
Other goals include:
° Devise an accurate and safe prenatal diagnostic test.
° Develop a database to assess more accurately clinical
variation, natural history, and prognostic indicators.
° Animal models of IP already exist; however, transgenic
mice will foment studies of the gene's lethality and the
expressivity of the disease.
° The researchers are now better able to study treatment
modalities once the gene is cloned.
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.
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.
Federal Legislation
IPIF cosponsors legislation affecting those with orphan
disease.