Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

September 10

Remembering Maureen Coleman

On August 31, 2013, the carcinoid/neuroendocrine tumor (NET) community throughout the world lost one of its most passionate advocates, Maureen Coleman, Founding Past President of CNETS Canada and a founding member of the International Neuroendocrine Cancer Alliance (INCA). Read rest of article.

July 29

Global Advocate for Neuroendocrine Cancer Patients Announces New Name — International Neuroendocrine Cancer Alliance (INCA)

The International Neuroendocrine Cancer Alliance (INCA) announced its new name, the official one to be used by the organization, which has committed to being the global advocate for neuroendocrine cancer patients. Envisioning a world where all neuroendocrine cancer patients get a timely diagnosis, the best care and ultimately a cure, INCA (formerly known as the Worldwide NET Cancer Awareness Day Alliance) was established in 2010 in Berlin, Germany. Read rest of article.

June 22

New video “Neuroendocrine carcinomas (NEC) outside the lungs”


Neuroendocrine carcinomas (NEC) outside the lungs.
New video from NET Kanker, the Dutch NET support group, with English subtitles

Poorly differentiated, high grade, neuroendocrine carcinomas (NEC, stage 3) are an aggressive form of cancer. NEC originating outside the lungs are very rare. In this film expert physicians in NET and NEC explain about diagnosis and treatment options for NEC. The specialists from the centers of expertise are:

– Dr. Margot Tesselaar, internist-oncologist, Antoni van Leeuwenhoek Hospital, Amsterdam
– Dr. Loes van Velthuysen, pathologist, Antoni van Leeuwenhoek Hospital, Amsterdam
– Dr. Annemieke Walenkamp, internist-oncologist, UMC Groningen
– Dr. Ferry Eskens, internist-oncologist, Erasmus MC, Rotterdam

See the video on YouTube ……

May 23

Teodora Kolarova Wins BAPRA Bright Award for “Follow the Zebra” Public Relations Campaign


Congratulations to Teodora Kolarova, a member of the Board of Directors of the International Neuroendocrine Cancer Alliance (INCA) and Chairperson of INCA’s Communications Committee, upon winning a BAPRA Bright Award 2013in the category “Innovative Campaign.”  The award recognized the “Follow the Zebra” public relations campaign which included a flash mob for NET Cancer Day 2012 and the 5-cartoon campaign of Netty the Zebra, created to bring about greater awareness of neuroendocrine cancer. The cartoons were featured in a calendar created especially for physicians and distributed to over 1,000 members of the medical community.

BAPRA Bright Awards, the only public relations (PR) contest in Bulgaria, affords PR professionals the opportunity to be among the leaders of the communications sector in Europe. The honorable Jury Committee of the Bright Awards is comprised of prominent international PR experts, with worldwide expertise in communications.  This year’s jury was chaired by Francis Ingham, Executive Director of ICCO, the global organization representing over 1,500 PR agencies in 28 national associations from around the world and the Director General of the UK PR consultancy Association (PRCA).

About Ms. Kolarova’s entry, juror Rohit Bhargava, CEO and founder of Influential Marketing, who gave the maximum score to the project, wrote in his evaluation: “Really loved the innovative approach to try and get this rare disease to stick in people’s minds. I could see how this would break through the clutter. The smart use of flash mobs and more modern methods also made this campaign memorable and effective. Great job!”

Ms. Kolarova has represented the Bulgarian cancer patient organization APOZ and Friends on the INCA Membership Council since March 2011. In her capacity as APOZ Communications Consultant, she has been dedicated to promoting cancer awareness and prevention, especially neuroendocrine cancers.  Ms. Kolarova has a background in communications, strategic counseling, media relations consultancy, creative writing, and project management.  She is the founder and owner of the public relations firm, PR NET.

March 22

Stichting NET-groep Raises Funds for International Research Study on NEC (Neuroendocrine Carcinoma)

An exciting weekend of events  (March 22-24) is planned  in support of a major fundraising effort by Stichting NET-groep in the Netherlands to establish an international research study on NEC (neuroendocrine carcinoma), grade 3, a fast-growing, aggressive neuroendocrine tumor that frequently begins in the lungs but can occur anywhere in the body. Due to the nature of the tumor, by the time a patient is diagnosed the cancer has generally spread.

There will be a run for children, a hockey tournament, and a walk/run for participants of all ages.  A highlight of the weekend will be a sold-out benefit evening on March 22 with performances by Flairck, an acoustic Dutch band; Louise Korthals; Francesca of Raab of Canstein; and Erik Mesie, former singer of Toontje Lager.  Guitarist virtuoso Erik Visser will accompany Erik Mesie.  Benefit guests are also invited to participate in an auction and enjoy refreshments.  The dress code for the evening is festive chic in black & white with red accents, in keeping with the NET zebra symbol and the red carpet.

Stichting NET-groep in the Netherlands Raises Funds for International Research Study on NEC (Neuroendocrine Carcinoma)

In June, a 113 km (70 mile) pilgrimage from Saria (Spain) to Santiago de Compostela in western Spain will be undertaken by Mark Schweitzer (42, diagnosed with a NEC in October 2012 with metastases to his liver and pancreas) and his good friend Don Scheers, who works for the ecumenical order of St. Lazarus of Jerusalem, to raise funds for the Neuroendocrine Carcinoma Research Fund. (Pictured is the Cathedral of Santiago de Compostela)

Visit the Stichting NET-groep website here (in Dutch) and in English by Google Translate here.

March 22

Rowing Between London and Sweden to Raise Funds and NET Cancer Awareness

Imagine rowing between London and Sweden – that was the goal of a team of rowers in support of their friend Matt who was diagnosed with a NET. Not only did they meet their goal of 1,000,000 meters (621 miles) they exceeded it by rowing 1,200,000 meters or 735 miles and raised an amazing £ 11,100 or $16,843!!! This is one of the many challenges the group will undertake this year to raise awareness of NET cancer and to support the NET Patient Foundation in the UK and the iCancer campaign in support of the anti-cancer virus research at Uppsala University in Sweden. Read more about the challenges the team is planning: http://www.thislifematters.co.uk/rowing-to-sweden.  Visit the NET Patient Foundation’s website, http://www.netpatientfoundation.org/, to learn more about their organization.

NET Patient Foundation rowing fundraiser

December 16

Stichting NET-groep Presents New Film and Information for Lung Carcinoid and Neuroendocrine Carcinoma Patients

A new film and website page dedicated to lung NETs (grade 1 carcinoid and grade 2 atypical carcinoid) has just been released by Stichting NET-groep, the NET patient organization in the Netherlands.  Dr. Wieneke Buikhuisen, a NET specialist from the Netherlands Cancer Institute, Antoni van Leeuwenhoek Ziekenhuis in Amsterdam, has been working with lung NET patients for eight years.  She is the featured presenter in the film which was created on NET Cancer Day 2012.  Early in 2013, the film will be subtitled in English.


The new website page, http://www.youtube.com/watch?feature=player_embedded&v=aPCeAaxapjY, which includes the film, provides extensive information about lung NETs including:

How do doctors determine the grade and type of lung NET?

  • How common are lung NETs/NEC (neuroendocrine carcinoma) in the Netherlands?
  • How common are lung NETs compared to NETs in other organs?
  • What tests are used for lung NET patients?
  • How are lung NETs treated?

There are also a dozen links to films about NETs, brochures about lung NETs and NEC, scientific articles, and more.  This is an excellent resource for lung carcinoid and neuroendocrine carcinoma patients.  In January 2013, Stichting NET-groep, in conjunction with a lung cancer patient organization in Holland, will be creating a film for neuroendocrine carcinoma patients, stage 3.

Thank you to Stichting NET-groep for all you do for carcinoid and NET cancer patients and their loved ones!

November 15

Irish and Swedish NET Cancer Experts Join Together for Inaugural Meeting of Irish Neuroendocrine Neoplasm Group

The inaugural meeting of the Irish Neuroendocrine Neoplasm Group was held this month at Trinity College Dublin.  Irish and international experts in carcinoid/NETs gathered to discuss advances in the field, diagnostic and therapeutic practices currently available in Ireland, as well as areas where Ireland is falling behind, especially in specialized nuclear medicine diagnostic and therapy tools.

Dr. Dermot O’Toole, Consultant Gastroenterologist/Pancreatologist and Associate Professor at St. James’s Hospital and Trinity College Dublin, who organized and served as Co-Chair of the Scientific Committee for the meeting, commented that the meeting “formed the backbone in paving the way for developing a recognized Irish Network to provide care for patients with this disease.”

An open patients’ forum on NETs was held in Trinity Biomedical Sciences Institute in conjunction with Worldwide NET Cancer Awareness Day on November 10.  Dr. Susan O’Reilly, Director of the National Cancer Control Programme (NCCP), opened the forum and patients and Irish and Swedish NET cancer experts participated in a question and answer session.  The creation of a formal Irish Neuroendocrine Patients Group was also an outcome of the day. Read more

Pictured above, left to right: Dr Dermot O’Toole, Consultant Gastroenterologist/Pancreatologist & Associate Professor St James’s Hospital & Trinity College Dublin; Dr Derek Power, Consultant Medical Oncologist, Mercy University Hospital, Cork; Ms Barbro Eriksson, Medical Oncologist, University Hospital, Uppsala, Sweden; Dr Susan O’Reilly, Director of National Cancer Control Programme; Mr Dan Granberg, Lead Uppsala NET Centre of Excellence, University Hospital, Uppsala and Justin Groghegan, Consultant Hepato-Bilairy Pancreatic

Fennell Photography Copyright 2012.

November 15

New E-Book Featuring Personal Experiences from Real People with An Insulinoma

A free copy of the e-book, My Insulinoma: Personal Experiences from Real People with an Insulinoma, is now available for downloading as a PDF (click here).  The book is also available on Amazon as an e-book for a Kindle (click here) ; all proceeds from the sales will go to the NET Patient Foundation in the UK.  The book is written by people with an insulinoma who want to share their journeys with this rare disease and contains information about symptoms, diagnosis and treatment.  It is dedicated to Te Rina Lyttle who died at age 15 from a malignant insulinoma in April 2012.

My Insulinoma, E-book, Book Cover


November 9

Oncolytic Viruses and NET Cancers — A Potential Breakthrough Treatment

Much has been written about a potential new treatment for neuroendocrine tumors being developed by Dr. Kjell Oberg’s team at Uppsala University Hospital in Sweden – a treatment which uses customized (i.e. molecularly engineered) viruses to target NET cancer tumor cells.  The story has been covered in the mainstream media under headlines such as “A Virus That Kills Cancer: A Cure That’s Waiting In The Cold.”

On November 2, the Carcinoid & Neuroendocrine Tumor Society of Singapore held a seminar on the subject of Oncolytic Virus Therapy for Neuroendocrine Tumors (NETs). In this talk, Dr. Oberg describes and illustrates exactly how the virus is developed, how it is targeted to NET cancer tumors, and the potential benefit to patients.

Below is a link to a recording of this important, if somewhat technical, seminar.


Oncolytic Virus Therapy, Part 1 – A Potential Breakthrough Treatment for Neuroendocrine Tumors


Professor Dr. Kjell Oberg PhD of Uppsala University

To learn more about the oncolytic virus fund at Uppsala University click here.