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Making history and working together to write the future of NETs

The NET Alliance was formed in 2008 to capitalize on a number of opportunities to improve the care of patients with NETs:

  • Raise awareness and knowledge of this potentially fatal disease1
  • Increase the timeliness and accuracy of diagnosis1
  • Improve outcomes in patients with metastatic disease1
  • Provide credible information for physicians and patients about the disease and its management2

Much has changed since 2008.

  • That year saw the publication of Dr. James Yao’s landmark epidemiologic survey of NETs in the Journal of Clinical Oncology. This article was instrumental in helping elevate awareness and a sense of urgency about neuroendocrine disease
  • The Yao article, along with the efforts of professional and patient groups, helped shift the mindset about NETs from an indolent, relatively benign cancer, to a potentially fatal disease that is more prevalent than historically believed
  • This shift has driven the push for more timely and accurate diagnoses and aggressive management of NETs. In fact, the increasing incidence of NETs may be due, in part, to heightened awareness and improved diagnosis2
  • In 2010, the World Health Organization (WHO) updated its classification guidelines for gastrointestinal NETs. For the first time, WHO formally recognized the malignant potential of NETs, suggesting to avoid the term "carcinoid" (or "cancer-like") to describe these tumors because of its "largely incorrect benign connotation"3
    Learn more about the WHO 2012 classification guidelines for NETs
  • The tenets set out in the WHO publication have been incorporated into important treatment guidelines such as those published by the North American Neuroendocrine Tumor Society (NANETS), the European Neuroendocrine Tumor Society (ENETS), the Union for International Cancer Control (UICC), and the American Joint Committee on Cancer (AJCC)
  • Steps to improve surveillance were taken in 2011 by the National Comprehensive Cancer Network (NCCN), which established an outcomes database for patients with NETs. Data are compiled from 7 leading cancer centers in the United States that have a program specializing in NETs. Preliminary results were presented at the 2012 American Society of Clinical Oncology (ASCO) annual meeting4
  • The annual Worldwide NET Cancer Awareness Day (WNCAD) was launched in 2010, providing for the first time a dedicated global platform for advocates, patients, and professional organizations to spread the word about NETs
    Learn more about WNCAD and how you can get involved

Let’s keep moving forward

Clearly this is an exciting time for the entire NET community.

Currently active throughout the world, The NET Alliance remains committed to improving knowledge and management of neuroendocrine tumors, and empowering patients to be more informed advocates.

There's more to do and we can do more with your help: The broad selection of resources available on this website is for you to use to engage with patients and other healthcare professionals in your area.

Practitioners such as yourself have helped implement successful awareness, diagnosis, and patient monitoring programs in different countries that are already improving the quality of care for people affected by NETs.

It’s important we keep the momentum toward improving outcomes and quality of life for patients with NETs.