PRINCETON, NJ -- (Marketwired) -- 07/09/13 -- Inspire, which builds and maintains online patient communities, has enlisted industry and advocacy leaders to create a peer-to-peer support community for those affected by pancreatic neuroendocrine tumors (PNET).
The Pancreatic Neuroendocrine Tumor (PNET) Support Community (www.inspire.com/groups/pancreatic-neuroendocrine-tumor-pnet) is a free global network for patients and caregivers to share information and support. Group members discuss such topics as practical tips for the newly diagnosed, chemotherapy and targeted therapies, and surgical options.
Inspire has partnered with a half-dozen leading NET-focused advocacy organizations to help create the online community. The nonprofit partners are:
•Carcinoid Cancer Awareness Network (CCAN) www.carcinoidawareness.org •Carcinoid Cancer Foundation www.carcinoid.org •Caring for Carcinoid Foundation www.caringforcarcinoid.org •New Jersey Carcinoid Cancer NETwork www.NJCarcinoidNETwork.org •North American Neuroendocrine Tumor Society www.nanets.net •Pancreatic Cancer Action Network www.pancan.org
Novartis Pharmaceuticals Corporation is the corporate supporter of this site.
Until now, there was no peer-to-peer community just for people affected by PNETs. Support for them existed within these organizations and others. The new online group gives the sponsoring organizations a place to send members of their groups for further interaction with patients just like them.
"We have seen repeatedly how online patient networks can empower people affected by rare diseases," said Inspire CEO Brian Loew. "We're grateful for the support of our nonprofit partners, and to Novartis, all of whom understood that PNET patients needed this kind of resource in which they can exchange information with others facing the same serious health challenges."
Neuroendocrine tumors (NETs) arise from cells that can produce and secrete a variety of hormones that regulate bodily functions(1). There are many types of NETs that can occur throughout the body; however, most are found in the gastrointestinal tract, lungs and pancreas(2). Neuroendocrine tumors originating in the pancreas are called pancreatic NETs, also sometimes referred to as islet cell tumors(3). Pancreatic NETs are less common than other types of cancer. They are different from pancreatic exocrine cancer, which is generally referred to as pancreatic cancer(4).
Princeton, NJ-based Inspire is the patient engagement company. Inspire creates safe, moderated online communities, organized by medical condition, and helps life science organizations connect with these highly engaged populations. Inspire builds and manages these communities in partnership with more than 80 national patient advocacy and support organizations.
1. National Cancer Institute. Dictionary of Cancer Terms: neuroendocrine tumor. Available at: http://www.cancer.gov/dictionary. Accessed September 2012.
2. Yao, et al. One Hundred Years After "Carcinoid:" Epidemiology of and Prognostic Factors for Neuroendocrine Tumors in 35,825 Cases in the United States. Journal of Clinical Oncology. June 20 2008; vol. 26, number 18.
3. National Institutes of Health, MedlinePlus Medical Encyclopedia: Pancreatic islet cell tumor. Available at: http://www.nlm.nih.gov/medlineplus/ency/article/000393.htm. Accessed September 2012.
4. American Cancer Society. Detailed Guides. Pancreatic Cancer. Available at http://www.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-what-is-pancreatic-cancer. Accessed September 2012.
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