Carcinoid & Neuroendocrine Tumor Society

An association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer,
a relatively rare disease which is poorly understood and is often misdiagnosed.

Resources For some fast facts on Carcinoid and NeuroEndocrine tumors, check out the Wikipedia entries for carcinoid and neuroendocrine tumors. For those patients and caregivers just coming to terms with a recent diagnosis, here are some helpful resources. You might print these out and take them with you when you visit a specialist physician. Fast Facts, FAQ flyer by the Carcinoid Cancer Foundation Introduction to Carcinoid, taken from cancerback.org.uk website Overview of Neuroendocrine Cancer, on the Neuroendocrine Cancer website Cancer Masquerader, article by Michael Novinson of The Dallas Chronicle, 1 Sep 2007 Carcinoid Screening, tests that can be done to confirm a diagnosis of Carcinoid or Neuroendocrine disease Benefits of Gallium 68 PET/CT over Octreoscan and other similar targeted scanning techniques.

Conference Video Recordings William Claxton, one of the founders of CNETS Singapore, has been involved in video recording of many international carcinoid and neuroendocrine tumor conferences. These videos provide an excellent resource for patients, caregivers and physicians. Many are also available as audio podcasts. Here is a complete list of these recordings: CNETS Ipsen 2015 Webinar Series - APNETS Conference in Penang, Malaysia, 30-31 Oct 2015 CNETS Ipsen 2015 Webinar Series - APHPB Conference in Singapore 20 Mar 2015 Oncolytic Virus Therapy - A Potential Breakthrough Treatment for Neuroendocrine Tumors CNETS Regional Conference 2012, Ottawa, May 2012 1st World Congress on Gallium-68 and Peptide Receptor Radionuclide Therapy , Bad Berka, June 2011 CNETS Regional Conference 2011, Halifax, May 2011 Caring For Carcinoid Foundation Patient Education Conference, Stanford University, September 2010 CNETS Regional Conference 2010, Vancouver, May 2010 CNETS Regional Conference 2009, Montreal, November 2009 CNETS Regional Conference 2009, Toronto, October 2009 NANETS National NETs Physician Conference, Charlotte, Nov 2009 CCAN National NETs Patient Conference, New Orleans, Sep 2009 CNETS Canada Carcinoid NETs Conference, Winnipeg, May 2009 CCF Carcinoid NETs Symposium, Mt Sinai Hospital New York, Apr 2009 CNETS Canada Carcinoid NETs Conference, Toronto, Oct 2008 CCF Carcinoid NETs Symposium, Mt Sinai Hospital New York, Apr 2008 NANETS Physicians Conference, Southampton Bermuda, Feb 2008 CCAN 4th Annual Conference, Long Island New York, Nov 2007 CCF National Conference, Norfolk Virginia, Sep 2007 CCAN 3rd Annual Conference, Long Island New York, Nov 2006 CCF National Conference, Portland Oregon, Sep 2006 CCF Carcinoid NETs Symposium, Mt Sinai Hospital New York, Apr 2006 CCF National Conference, Philadelphia, Sep 2005 CCF Carcinoid NETs Symposium, Mt Sinai Hospital New York, Apr 2005 CCF National Conference, New Orleans, Sep 2004 Of course, our own events have been recorded and may be accessed on the events page.

International Support Organisations While CNETS Singapore is the only carcinoid support organisation in Asia Pacific, there are a number of similar support groups in other parts of the world that have been operating for some time. These groups provide a wealth of useful information about treatment options and contacts for specialist physicians. Carcinoid Cancer Foundation Established in 1968, this group was founded by Dr. Richard and Monica Warner, and operates as a charitable foundation. It is the oldest and most well-known organisation in the world which is specifically focused on promoting awareness, education and facilitating research on carcinoid and neuroendocrine disease. Carcinoid NeuroEndocrine Tumour Society Canada CNETS Canada is a charitable organisation principally serving Canadians, though it has an international following. The Board of Directors of CNETS Canada have given much support to our association in order to promote the vision of an international network of regional support groups. Carcinoid Patient Association (CARPA) Carpa is a Swedish association which is aimed at patients with tumors such as the hormone carcinoid, endocrine pancreas tumors, etc. The association is open to patients, family caregivers, physicians and researchers.

Online Communities The most immediate resource for patients are the online support communities. These communities are free, they are available around the clock, and joining them puts you in touch with other patients and in some cases with specialist physicians. You do not need to identify yourself other than to provide a valid email address. ACOR Carcinoid Patients Support Group This forum is an email-based service operated by Association of Cancer Online Resources (ACOR), which began service in 1997. There are over 800 members (subscribers). Use of the ACOR lists can be a bit daunting - so we produced a simple user guide. This user guide explains subscription, using the list, changing preferences, changing email address or suspending mail, changing passwords and more. Smart Patients (Free membership) An online community where cancer patients (not limited to those with neuroendocrine disease) and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. Carcinoid Yahoo Group (Yahoo account required) CARCINOID-y(Yahoo) is a low-volume, moderated, educational discussion list for patients and/or their immediate family, researchers, and physicians, to discuss clinical, nonclinical issues and advances pertaining to Carcinoid Cancer. There are over 900 members. Carcinoid NETS Canada Yahoo Group (Yahoo account required) This is a regional group principally serving Carcinoid and NETs patients and caregivers in Canada. The group is moderated by John Hambleton, Maureen Coleman and others. There are over 150 members. Carcinoid Coffee Cafe (Facebook account required) A very active Facebook group for patients, caregivers and medical professionals involved with neuroendocrine cancer. Most members appear to be from North America. NET Patients Sharing (Facebook account required) An active Facebook group for patients and caregivers focused on education regarding NET cancer. Unicorn Fundation (Facebook account required) A Facebook group for Australian patients, caregivers and medical professionals involved with neuroendocrine cancer.



Professional Resources Asia Pacific Neuroendocrine Tumor Society (APNETS) APNETS is a new organisation whose members are experts in the field of neuroendocrine tumour disease working in private and public healthcare instititutions throughout Asia Pacific. The group was established in 2013 by Dr Harjit Singh. North American Neuroendocrine Tumor Society (NANETS) NANETS is an organisation whose members are physicians dedicated to improving management of neuroendocrine disease through increased research and educational opportunities. The group was established in 2006 by Kari Brendtro and Dr. Larry Kvols. UK and Ireland Neuroendocrine Tumour Society (UKINETS) This is a professional group which aims to promote research, education, training and best clinical practice across a multidisciplinary area in the field of endocrine tumours. European Neurendocrine Society (ENETS) This professional group was formed in 2005 with the aim of integrating basic and clinical research with teaching and to establish guidelines for the diagnosis and therapy of gastroenteropancreatic neuroendocrine tumors (GEP NETs). ACOR Carcinoid Doctors Support Group This is professional forum operated by Association of Cancer Online Resources, established in 2006 exclusively for physicians. Membership includes internationally renowned carcinoid/NET specialists such as Dr's. Lowell Anthony, Jeff Geschwind, Matthew Kulke, Kjell Oberg, Thomas O'Dorisio, Rodney Pommier, Manisha Shah, Michael Soulen, Aaron Vinik, Richard Warner, Bertram Wiedenmann, Eugene Woltering and James Yao.

What is a Support Group? Strictly speaking, support groups bring together individuals in order to give and receive both emotional and practical support as well as to exchange information. But some support organisations are established mainly to promote awareness, education and/or facilitate research. These organisations may provide referrals to specialist physicians and offer online resources to patients, but unless they can handle specific case inquiries, they are not technically considered support groups. Support organisations can also have very different financial structures, from profit-making to non-profit enterprises. Non-profits may or may not have charity status, which limits the ways in which they can raise funds. And charities may operate as a company with named shareholders, a trust which has named beneficiaries, or as a foundation which has no shareholders, no specific beneficiaries and is a separate legal entity. In summary, there are a broad spectrum of NETs support organisations, each with different objectives. In dealing with these organisations, it is helpful to understand their charter. This will help you set your expectations accordingly.

Want to Share? If you have insights and expertise that you would like to share, please contact us. We are planning a wiki which will tap the shared knowledge of our community to provide (what we hope will be) a comprehensive resource on carcinoid and neuroendocrine disease.