November 5

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To read our latest news for NET Cancer Day, please click here…

November 3

CNETS Canada Second Annual NET Cancer Awareness Day Breakfast

CNET BreakfastInvite2014To mark international NET Cancer Awareness Day , CNETS Canada is holding  its second annual breakfast in Toronto, Ontario at the Arta Gallery in the Distillery District.   Patients, their families, friends, supporters, the medical community, industry representatives, politicians and bureaucrats from across Ontario will gather to learn more about the disease, treatments, research, and the health systems that support this patient community.
Jackie Herman, the President of CNETS Canada and a NET patient herself, will present information about the education and awareness that CNETS Canada provides, not only to patients and their support system but also to the medical community and Canadian policy makers.   She will remind Canadians that the incidence of this disease in Canada is on the rise and that it can take up to seven years for Canadians to be diagnosed from the time they first see a doctor with symptoms.  High level results from the INCA/Novartis NET patient survey will be shared with attendees of the breakfast.   Jackie will also share greetings to the organization and NETs community from several Canadian politicians.
Dr. Shereen Ezzat, a world renowned endocrine oncologist from the University Health Network’s Princess Margaret Hospital in Toronto, will present about the symptoms and diagnosis of this disease as well as about treatments and research being done in this area.
Mona Sabharwal, Executive Director of the well-respected pan-Canadian Oncology Drug Review (pCODR) , a programme of the Coordinating Agency for Drugs and Technologies for Health will also present.   This body provides the health technology assessment for oncology drugs including cancer drugs for NETs. This review process is used by provincial/territorial governments to decide whether to reimburse eligible Canadians for their medications.  Mona will talk about making safe and effective treatments available to patients and doing a comprehensive review, including seeking the advice of oncologists who work specifically in the cancer field and patients who have actually had experience with the drugs under consideration.
CNETS Canada is expecting a good turnout to this now annual event and attendees will enjoy a complimentary breakfast throughout the session.
In addition to this event, CNETS Canada is promoting participation in the NET Cancer Day Selfie initiative among its membership and Facebook and Twitter followers.

November 3

US governors show their support for NET Cancer Day


The Carcinoid Cancer Foundation has contacted every Governor in the United States seeking proclamations and letters of support for NET Awareness Cancer Day 2014. As of October 29, thirty-eight (38) governors have recognized the importance of early detection and proper treatment leading to improved outcomes and a better quality of life for carcinoid/NET cancer patients!!  We anticipate even more proclamations in the days leading up to Worldwide NET Cancer Awareness Day!

November 3

CFCF Launches Major Immunotherapy Initiative


After a year of reviewing the research, consulting with experts, and engaging leading immunotherapy centers, the Caring for Carcinoid Foundation (CFCF) is thrilled to announce the launch of a major immunotherapy initiative. A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. We are eager to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancers.

The Caring for Carcinoid Foundation’s strategy brings leading experts – who have been involved in immunotherapy breakthroughs for other forms of cancer – to the cause of developing better treatments and cures for neuroendocrine cancers. It also includes a clinical trial for two major forms of neuroendocrine tumors (NETs): pancreatic and gastrointestinal (carcinoid) NETs.


In a further exciting development, Ron Hollander, Executive Director of the Caring for Carcinoid Foundation, announced that CFCF has received a grant of $1 million to support half of the projected cost of the initial projects in this program. “We feel a real sense of urgency to test the potential of immunotherapy to provide treatment breakthroughs for NETs,” said Ron. “The grant from the TripAdvisor Charitable Foundation serves as a challenge to CFCF and the entire NET community to rapidly raise the remaining $1 million to pursue these exciting projects. We are so grateful for the foundation’s commitment and couldn’t be more excited about this initiative.”

Specifically the initiative will initially fund projects in three major areas:

The first project will engage the team that developed a breakthrough immunotherapy technology to specifically target neuroendocrine tumors. This will include leading immunotherapy expert Dr. Carl June, and neuroendocrine tumor researcher Dr. Xianxin Hua, both from the University of Pennsylvania. They will modify CAR T-cells to target and kill neuroendocrine tumor cells, a method that has had dramatic results in patients with other cancers. Success in this project could pave the way for trials of this breakthrough technology for neuroendocrine cancers.

The second project consists of conducting a clinical trial of two immunotherapy therapies in pancreatic and carcinoid neuroendocrine patients. This project includes a multidisciplinary team led by Dr. Pamela Kunz from Stanford University, and consists of a clinical trial, combining two immunotherapy drugs that are in clinical trials for other cancers. An innovative delivery technique will also be tested to reduce the risk of adverse effects.

The third project studies the immune characteristics of neuroendocrine tumors to guide CFCF’s testing of immunotherapy treatments. This piece is essential to maximizing the chances of success in both other immunotherapy projects. CFCF is inviting immunology experts to systematically characterize neuroendocrine tumors’ immune features and genomes, and multiple grants will be awarded to study and profile these tumors.

To learn more, visit

For more information, contact Jamie Lacroix, Director of Communication & Outreach, at

November 3

Results from first global survey of neuroendocrine tumor (NET) patients reveal profound impact of this rare cancer on quality of life

The International Neuroendocrine Cancer Alliance (INCA) and Novartis announced the quality-of-life results from the first global survey of patients with neuroendocrine tumors (NETs), a rare type of cancer1. Nearly 2,000 patients from 12 countries completed the survey, which was a collaborative effort between INCA and Novartis. The results were presented at a medical meeting and provide compelling data documenting the impact of NETs on people living with this disease1. These quality-of-life findings are the first in a series of results from the survey being released in conjunction with Worldwide NET Cancer Awareness Day (WNCAD), November 10. Read rest of article.

September 30

“Le Sourire de Sabrina” brings Netty to France for NET Cancer Day

The first event in Restigné, at the heart of the Loire Valley in France

The day before the world NET cancer day

Zebras take the vineyard by storm! 

Sunday November 9, 2014 – all day

Le Sourire de Sabrina” (Sabrina’s Smile) is a positive, cheerful association. It was founded in March 2014 to continue the fight of a young woman named Sabrina, who passed away in December 2013, after putting up an admirable fight against the most aggressive form of NET cancer: a poorly differentiated neuroendocrine tumor. She had just turned 33.

The purpose of the association is:

-         to raise awareness of NETs and to turn the spotlight on its zebra ribbon symbol and on this little-known type of cancer.

-         to support research into NETs.

-         to help improve cancer patient comfort.

This is why Le Sourire de Sabrina is organizing the first “Zebra Day” (“Journée Zébrée”, which rhymes in French), with the following events:

-         In the morning, a run (“les foulées zebrées”) and a walk (“la balade vigneronne”) in the vineyard. All participants will wear the zebra ribbon

-         Introduction to line dancing

-         Painting and photography exhibition

-         Walking with donkeys (cousins to zebras)

-         Evening concert

APTED and Professor LECOMTE, an NET specialist in Tours, have been invited and will attend.


For more information, click here:

(if you don’t speak French, you can use an online instant translation service)




August 21

Remembering Pascal Louw

The sad loss of our dear friend and passionate NET patient advocate Pascal Louw has deeply shaken us all at INCA. We will miss a true gentleman, a wonderful colleague, a good man.


We will strive to keep Pascal’s passion alive!

Sincere condolences for Christine, his family, friends, and all at APTED.


May 20

Unicorn Foundation employs first NET Nurse to run support services

The Unicorn Foundation has launched their first NET Cancer Nurse Specialist telephone and internet support for Australian (& New Zealand) patients. Given the large geographical impediments for patients outside large metropolitan centres to get to our support groups, it was decided that the most effective way to service the needs of all NET patients was to have a ‘hotline’ staffed by an experienced NET nurse. The response to this program has had overwhelming support from our patients and has improved the journey with NETs for many. Please take a look at our first in a series of Patient Videos that show the affect that support from a patient group has on a NET patients journey.

May 19

Seeing it from both sides…

This video, filmed by the UK’s NET Patient Foundation,  shows an interview with the remarkable Nancy Teixeira, who as both a NET patient and a NET nurse, has a unique perspective on the management of NETs.

To view the video, please click here…

nancy t

May 19

Kids’ resources on Multiple Endocrine Neoplasia

INCA member, the Association for Multiple Endocrine Neoplasia Disorders (AMEND) has sponsored the production of Medikidz™ comics on multiple endocrine neoplasia types 1 and 2 (MEN1 and 2). MEN disorders are inherited syndromes comprising more than one type of neuroendocrine tumour. Each child of an affected parent has a 1 in 2 chance of inheriting the condition. NETs occurring in MEN include those in the pancreas and phaoechromocytomas amongst others.

It is never easy trying to tell a child that they have or are at risk of having a genetic disorder. Children learn different things at different ages. In many instances however, this needs to be done, whether to ensure compliance with hospital tests or to discuss genetic testing. This is why AMEND worked with Medikidz™ to produce the exciting, vibrant and simply-written comic books. Comics, together with a leaflet on how to talk to children about MEN are available FREE to patients via AMEND.

To learn more about the comics which were produced as part of AMEND’s ‘Project Superhero!’ funded by the UK National Lottery, please visit the AMEND (HONCode certified) website:

For more information about Medikidz™, visit:

Coming soon will be corresponding children’s website animations on MEN1 and MEN2, so keep an eye on the AMEND website for further news!

“…the premier provider of quality information on Multiple Endocrine Neoplasia Disorders” Genetic Alliance (USA)