Mission
Inflammatory Breast Cancer New England Region Inc. is a nonprofit organization dedicated to supporting education and an enhanced understanding of inflammatory breast cancer.
Based in Massachusetts, the organization is a coalition of professionals from a range of industries who are dedicated to promoting educational efforts and support for patients and caregivers.
History
The organized was established in 2008 in Massachusetts and received its 501(c)3 designation as a charitable organization in 2009.
The catalyst for creating the organization resulted from the efforts of survivors, caregivers and friends in the healthcare and business communities who wanted to establish a central resource where patients could find information.
Very little research has been done on IBC. And the aggressive nature of the disease in many cases adds to the pressure that already exists for patients trying to make treatment decisions. Patients battling IBC soon discover the lack of published information and disease-specific support can present obstacles as they navigate their treatment journey.
And many find that being diagnosed with a somewhat rare disease can be an isolating experience.
Identifying the need for specialized support, in 2001, two IBC survivors formed the first-ever networking group for women with IBC in New England.
In 2009, the group, called IBC New England, began a partnership with Facing Cancer Together, a nonprofit organization which provides facilitated support services to people with cancer free of charge. The group meets periodically throughout the year in Newtonville, Massachusetts, and provides a venue for information exchange and general support. Participants attend meetings from throughout the region.
In 2002, a research effort focused solely on IBC was launched at Tufts Medical Center in Boston. Since that time, additional research and clinical trials have been initiated at Massachusetts General Hospital and other institutions in the Boston area.
In partnership with other organizations, the peer-driven networking group has worked to build awareness about IBC through the production of educational materials and by providing sources and interviews with the media.
In 2008, friends and supporters of these various efforts came together to establish a formal nonprofit organization to serve as a resource center to highlight the research and support services that are available in the region for those diagnosed with IBC.
As the main mission of IBC New England Region Inc. is education, the board is working on a series of initial projects to promote and disseminate educational material, with the creation of its organizational website, publication of educational brochures and the initiation of planning for an educational conference.
IBC New England Region Inc. hopes to elevate the understanding of this often misunderstood and deadly disease. Through these initial projects and working in collaboration with other organizations, the hope is that the effort will begin to fill some of the voids that exist in information and services and remove some of the obstacles that challenge patients as they fight this disease.
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