Global recognition of the need for NET (neuroendocrine tumor) cancer awareness will be marked by the third annual worldwide NET Cancer Day on November 10, 2012. In anticipation of the day, the Worldwide NET Cancer Awareness Day Alliance has launched a zebra cartoon sequel, chronicling the journey of a NET patient seeking a proper diagnosis of a rare type of cancer. Each month a new episode will appear – on the netcancerday.org website and across social media channels, including the Carcinoid Cancer Foundation’s Facebook page and the NET Cancer Day Facebook page, counting down to November 10. (Click on the cartoon below to see it in full size.)
The creator of the five-episode zebra cartoon sequel is Nikolay Gionov from Bulgaria. He holds an MA degree in Graphic Arts from the National Institute of Arts in Sofia, Bulgaria, the oldest and most renowned academy of arts in the country.
Why is the zebra the universal symbol for NET (neuroendocrine tumors) cancer? In medical schools in some countries, students are told, “When you hear hoof beats, think horses, not zebras.” Physicians are taught to focus on the most likely possibilities when making a diagnosis, not the unusual ones. Sometimes physicians need to look for a zebra. In the rare disease community, the zebra can be carcinoid or a related neuroendocrine tumor (NET), such as a pancreatic NET. Rare diseases like NET cancers (“zebras”) can be overlooked because the symptoms are similar to those of more common diseases such as Crohn’s disease, IBS (irritable bowel syndrome), asthma or rosacea (“horses”).
Now in its third year, NET Cancer Day aims to raise awareness about cancers called neuroendocrine tumors (NETs) and the need for timely detection, diagnosis and treatment; bring hope to NET cancer patients, their caregivers and families; and drive action. More than 50% of NET patients are incorrectly diagnosed and initially treated for the wrong disease, for three to seven years on average. Often the correct diagnosis is not made until the cancer has spread (metastasized). The need for better awareness and understanding of NET cancers is underscored by the coverage of the death of Steve Jobs, former Apple CEO, in October 2011. Mr. Jobs had a pancreatic neuroendocrine tumor (pNET), a slow growing and rare cancer that is often confused with the more aggressive pancreatic cancer, which many reports said he had.
The Worldwide NET Cancer Awareness Day (WNCAD) Alliance is comprised of carcinoid and NET patient advocate groups from Australia to North America. The groups and their representatives are:
Australia, The Unicorn Foundation, John Leyden, MD*
Bulgaria, APOZ & Friends, Teodora Kolarova*
Canada, Carcinoid and NeuroEndocrine Tumor Society (CNETS) Canada, Pierrette Breton* and Maureen Coleman
France, APTED, L’Association des Patients porteurs de Tumeurs Endocrines Diverses, Pascal Louw
Germany, Netzwerk Neuroendokrine Tumoren (NeT) e. V., Katharine Mellar
The Netherlands, Stichting NET-groep, Carmen-miranda Kleinegris
Norway, CarciNor, Tore Aasbu*
Singapore, Carcinoid and NeuroEndocrine Tumor Society (CNETS) Singapore, William Claxton
Sweden, CARPA (The Carcinoid Patient Association), Agneta H-Franzen*
United Kingdom, The NET Patient Foundation, Catherine Bouvier and Maia Sissons*
United States, Carcinoid Cancer Foundation, Grace Goldstein*
Grace Goldstein, Chief Operating Officer of the Carcinoid Cancer Foundation, serves as Chairperson of the WNCAD Alliance’s Executive Committee. The Executive Committee members, marked with an asterisk above, are Tore Aasbu, Pierrette Breton, Agneta H-Franzen, Teodora Kolarova, John Leyden, and Maia Sissons.
Join our efforts to promote NET cancer awareness by sharing the zebra story to make NET cancers better understood throughout the world!
If you don’t suspect it, you can’t detect it!