Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

May 19

The CarciNor (Norway) award for research on NET Cancer 2013

The CarciNor (Norway) award for research on NET Cancer 2013 – were divided equally by two research studies in Norway.

”Gastroenteropancreatiske neuroendocrine neoplasms and tumors (GEP-NENS & NETS): epidemiology, clinical-pathological characteristics, treatment and survival.

A population-based cohort study from South-western Norway.”
By Jan Arne Soreide, MD Phd, Department of Surgical Gastroenterology, Stavanger University Hospital.


”Symptoms, symptom relief, vitamin status and quality of life in patients with metastatic neuroendocrine small intestine cancer.”

By Institute of Cancer, Haukeland University Hospital and Oslo University Hospital, Rikshospitalet.
Represented by Liv Meyer, NET cancer nurse and professor Halfdan Sorbye, MD Phd, both Institute of Cancer, Haukeland University Hospital

Read the more about the CarciNor award http://carcinor.wordpress.com/2014/05/05/carcinor-forskningspris-for-2013/

Forskpris 2013 kort


May 19

Belgian insulinoma patient tells her story

24 year old Kristina was diagnosed with a NET in March 2013 after a long period of misdiagnoses.

Several doctors dismissed her complaints over the course of a number of  years.

After she fell into a coma  they finally found it was an insulinoma (and no, no drugs!) on her pancreas that caused all her problems.

Kristina decided to raise more awareness about NETs in Belgium by telling her story and writing daily on her blog: about hope and worries, and her PRRT treatment.

She organized an awareness campaign, raised money, got articles in magazines and last week she decided to work as a volunteer in our Belgian NET & MEN patient group.

We are so pleased that Kristina wants to share her story and helps other people in an similar situation.

This article was posted by vzw NET & MEN Kanker. To read the full article, please visit their site at:



February 19

First Global NET Patient Survey

As part of  the International Neuroendocrine Cancer Alliance’s mission to raise awareness of NET cancer among the healthcare community as well as the general public, we are pleased to announce the launch of the first ever Global NET Patient Survey! Read rest of article.

January 22

Carcinoid NeuroEndocrine Tumour Society of Canada Partners with Cancer Research Society to Fund Neuroendocrine Tumor Research

The Canadian Cancer Research Society, in partnership with CNETS Canada, is awarding $120,000 to Dr. Nahum Sonenberg and his team of researchers from McGill University to pursue new ways to treat pancreatic neuroendocrine tumors, the second most common type of cancer affecting the pancreas. Read rest of article

December 13

$1 Million Challenge Grant Awarded to Caring for Carcinoid Foundation

The Caring for Carcinoid Foundation (CFCF) in the United States has received an extraordinary $1 million challenge grant from the Goldhirsh-Yellin Foundation. This challenge is designed to accelerate and expand a promising and exciting research portfolio, with the goal of new treatments and an eventual cure for carcinoid and other neuroendocrine tumors (NET). Read rest of article.

December 13

CNETS Canada Launches NET Patient Education Handbook

The Carcinoid NeuroEndocrine Tumour Society Canada has launched the first comprehensive Canadian NET cancer patient and caregiver education handbook in interactive soft copy format. This handbook is the result of many months of work and is a valuable source of information not only for patients but also for caregivers, health care providers, politicians, civil servants, funders and the general public to inform them on this uncommon, often undiagnosed or misdiagnosed form of cancer. Read rest of article.

December 13

42 United States Governors Support NET Cancer Awareness Day

The Carcinoid Cancer Foundation reported that forty-two U.S. Governors issued proclamations and letters of support for the 4th annual NET Cancer Awareness Day on November 10, 2013. This marks a record in the four-year history of the worldwide awareness day! Read rest of article.

December 12

News from Australia

The South Australian Cancer Pathway for Gastroenteropancreatic NETs Launched on November 13th at Major Oncology Meeting in Australia (COSA ASM). The Unicorn Foundation is proud to announce the launch of the South Australian Gastroenteropancreatic NETs (SA GEP NET) Cancer Pathway during the Clinical Oncology Society meeting by the Hon Jack Snelling MP, South Australian Minister for Health and Aging. Read rest of article.

November 9

NET Cancer Day Webinar Features Three Leading Carcinoid/NET Specialists

In recognition of Worldwide NET Cancer Awareness Day on November 10, NorCal CarciNet is hosting a one-hour, free webinar. Here’s a great opportunity to hear from 3 of the leading specialists in carcinoid/NET cancer treatment on NET CANCER DAY: Professor Dr. Richard P. Baum, Bad Berka, Germany; Dr. Eric Liu, Vanderbilt University, Tennessee; and Dr. Thomas O’Dorisio, University of Iowa. The webinar will be moderated by Josh Mailman, President of NorCal CarciNET and Chair of Patient Advocacy for the Society of Nuclear Medicine, and Bill Claxton, founder of CNETS Singapore. Read rest of article.

November 9

Remembering Agneta H-Franzen

It is with deep sadness that INCA has learned of the passing of Agneta H-Franzen, Chairperson of Carpa, the Swedish NET patient organization, and a founding member of the International Neuroendocrine Cancer Alliance.  Agneta was a passionate advocate for carcinoid/neuroendocrine cancer patients in Sweden and around the world. Read rest of article.