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New Online Resource Gives Voice to the Advanced Breast Cancer Community Who Often Feels Overlooked, Especially During Breast Cancer Awareness Month


October 1, 2012 - Princeton, NJ

An online resource -- AdvancedBreastCancerCommunity.org -- relaunches just in time for Breast Cancer Awareness Month to help bring much-needed recognition to the advanced breast cancer community. This site, shaped by guidance from 13 leading breast cancer advocacy organizations, provides the approximately 250,000 women(1,2) globally who will be diagnosed with the advanced form of the disease this year with a clearinghouse of up-to-date information specific to metastatic or advanced breast cancer. The relaunched website is the result of collaboration between Novartis Pharmaceuticals Corporation and Inspire, a company that builds and manages online support communities for patients and caregivers.

Advanced Breast Cancer is comprised of metastatic breast cancer (stage IV) and locally advanced breast cancer (stage III) that cannot be cured by surgery or radiation. Metastatic breast cancer is the most serious form of the disease and means that the cancer has spread to other parts of the body, such as the bones or liver, and is incurable(3). Locally advanced breast cancer is cancer that has spread to lymph nodes and/or other tissue in the area of the breast, but not to distant sites in the body(3).

People with advanced Breast Cancer have unique needs and face different challenges than those with the earlier stages of the disease, but resources and attention for this community have been limited. With this in mind, the relaunch of the site features Count Us, Know Us, Join Us, an initiative that recognizes those living with advanced breast cancer as well as their caregivers, loved ones and supporters, while also providing information and support. In an effort to draw attention to the number of people living with advanced breast cancer, the site encourages people to be counted as part of the advanced breast cancer community. Once counted, these voices will be displayed as unique icons that make up the Count Us, Know Us, Join Us mosaic.

"I meet many people living with advanced Breast Cancer who either have no local support or are unable to get out and attend these programs. Having a global resource like AdvancedBreastCancerCommunity.org is a tremendous help to everyone, especially to those who find themselves somewhat isolated," says CJ (Dian) M. Corneliussen-James, President of METAvivor Research and Support, Inc., a non-profit advanced Breast Cancer organization. "I greatly appreciate the effort that was taken to gather the input of key community leaders and to truly listen to the patient community. I encourage everyone to support the voice of our community and to be counted."

"We're pleased that Novartis and the advocacy community are supporting this resource, which people around the world living with advanced Breast Cancer and their caregivers say is so critical to their journey," says Inspire CEO Brian Loew.

The new comprehensive site offers information tailored to the needs and challenges of the community with sections titled "Understanding Metastasis and Recurrence," "Creating a Personal Plan," and "In-Person Support." The site also features videos that bring to life the experiences of those touched by advanced Breast Cancer, as well as links to all of the advocacy partners' relevant content.

About Count Us, Know Us, Join Us
The mission of Count Us, Know Us, Join Us is to recognize those living with advanced Breast Cancer, their caregivers, supporters, friends and family members. This is a community that has different physical and emotional needs from those in earlier stages of breast cancer. Novartis Pharmaceuticals Corporation has partnered with several advocacy organizations including CancerCare, Living Beyond Breast Cancer, Metastatic Breast Cancer Network, METAvivor Research and Support Inc., and SHARE to create the site.

About Inspire
Princeton, NJ-based Inspire (www.inspire.com) creates safe, moderated online communities, organized by medical condition, for patients to share information and to support each other. Inspire builds and manages these communities in partnership with more than 80 national patient advocacy and support organizations. Among the organizations are the National Osteoporosis Foundation, the Ovarian Cancer National Alliance, and the Asthma and Allergy Foundation of America. For more information, visit http://corp.inspire.com.

References

(1) Buckley N, Isherwood A. Breast Cancer. Decision Resources. March 2011:1-301.

(2) Forouzanfar, M et al. Breast and Cervical Cancer in 187 Countries Between 1980 and 2010: A Systematic Analysis. The Lancet. October 2011;378:1461-84.

(3) Breast Cancer Staging (American Joint Committee on Cancer) Web site. Available at: http://www.cancerstaging.org/staging/posters/breast12x15.pdf. Accessed February 9, 2012.

Inspire Media Relations
John Novack
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