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Representing 11 countries and 4 continents, the World NET Community Steering Committee brings together NET cancer and carcinoid support and advocacy groups from around the world.
A Novartis (pharmaceutical company) initiative which promotes awareness of neuroendocrine cancers.
CART-WHEEL.org is an international, ethically approved website that collects information directly from people who are affected by rare tumours and rare subtypes of common cancers. With the individual’s permission, this important information can then be accessed by cancer researchers studying rare tumours, giving them access to a larger number of cases and enhancing the quality of their research.
Clincial Oncological Society of Australia. COSA is the peak Australian body for oncologists.
Endocrine Surgeons of Australia. Well presented information about all endocrine related surgery.
Australian Gastrointestinal Trials Group. The largest Australian group conducting trials into gastrointestinal cancers.
Cancer Council Australia main homepage with links to States. Good general information.
National Government agency with mission to reduce impact of cancer on Australians.
A National, independent group giving cancer patients a ‘voice’.
Gastroenterological Society of Australia Website.
Endocrine Society of Australia website.
Open forum Australian blog site related to NETs/carcinoid tumours
Novartis is a pharmaceutical company which produces octreotide (sandostatin and sandostatin LAR) which is an analogue of the hormone, somatostatin. They also produce the mTOR inhibitor everolimus (affinitor).
Ipsen is a pharmaceutical company which produces lanreotide (Somatuline LA, Somatuline LAR) which is an analogue of the hormone, somatostatin.
This website, developed by Ipsen Australia is for the public and medical professionals interested in NETs. It also has restricted access to SIGNETURe, a NET patient registry.
Carcinoid and Neuroendocrine Tumour Society (CNETS SG),Singapore. An association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer
United States of America
Carcinoid Cancer Foundation. The oldest and most comprehensive site relating to neuroendocrine cancers.
Conference DVDs, information packs. CCAN has produced over 17 conferences.
North American Neuroendocrine Tumour Society. NETs education and guidelines
Caring for Carcinoid Foundation website.
The Carcinoid Neuroendocrine Tumour Society Canada, (CNETS Canada), has a network of Support Groups across Canada providing support and education.
The Canadian Oncology societies.
Europe and the United Kingdom
Informative site of the European Neuroendocrine Tumour Society
The NET Patient Foundation is the only charity in the UK and Ireland that offers information and advice to those affected by neuroendocrine tumours.
The Carcinoid Patient Association of Sweden (website has English translation)
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers.
Bundesweites Netzwerk Neuroendokrine Tumoren (NeT) e. V.German NET group (no English translation of website)
Bundesorganisation Selbsthilfe NeuroEndokrine Tumoren e. V. German NET group (no English translation of website)
Stichting Doorgang. Dutch NET group/website (no English translation of website)
CarciNor, foreningen for personer med nevroendokrin kreft. Norwegian NET group (no English translation of website)