The patient advocate view.
Inflammatory breast cancer (IBC) is considered a rare disease by researchers and clinicians, and is classified as such by the Office of Rare Diseases by having a prevalence of fewer than 200,000 affected persons in the United States [5]. To affected persons, their family and friends, however, IBC is not rare; it is real, it is here, it is pain, its treatment is often filled with its own pain. As with many other diseases, IBC demands that patients be their own best advocate; no one is pre-trained for this role, it is all on-the-job-training. The "IBC Community" is comprised of those who have been diagnosed with IBC, their family, their friends, and interested other persons. It is a passionate, committed community, knit together principally by the Internet, e-mail, and telephone. The Inflammatory Breast Cancer Research Foundation was founded in 1999 by advocates, and focuses on education and awareness of IBC symptoms, diagnosis, and treatment, as well as assisting researchers and clinicians investigate IBC, the results of which will be of diagnostic and treatment value.
Johnson
G Owen
GO
IBC Research Foundation, Bainbridge Island, WA 98110, USA. ojohnson@ibcresearch.org
Kirschenbaum
Marilyn
M
Mason
Ginny
G
Rush
Linda Riley
LR
D000230:Adenocarcinoma / Q000453:epidemiology / Q000473:pathology*; D000328:Adult; D017677:Age Distribution; D001707:Biopsy, Needle; D001943:Breast Neoplasms / Q000453:epidemiology* / Q000473:pathology*; D002908:Chronic Disease; D005260:Female; D006801:Humans; D007150:Immunohistochemistry; D015994:Incidence; D008875:Middle Aged; D010344:Patient Advocacy; D010358:Patient Participation; D035583:Rare Diseases; D016019:Survival Analysis