Worldwide NET Cancer Awareness Day Unites People Around the World on November 10, 2011

NEW YORK, October 24, 2011 -

- Global Campaign to Raise Awareness of Rare Cancer in Second Year

Go around the globe for the second Worldwide NET Cancer Awareness Day (WNCAD) on November 10, 2011.  Throughout that day, videos featuring NET events and experts will air on www.netcancerday.org as the sun travels west, from Australia to Europe to North America.  People can also “Like” the campaign on Facebook (https://www.facebook.com/netcancerday) and “Think Zebra” to share the NET campaign’s zebra mascot.

(Logo: photos.prnewswire.com/prnh/20111024/DC91097LOGO)

Now in its second year, Worldwide NET Cancer Awareness 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 recent death of Steve Jobs, former Apple CEO.   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 Importance of Raising Awareness about NETs

The incidence of neuroendocrine tumors is on the rise globally.  Although they are usually slow-growing cancers, NETs are difficult to detect and diagnose. They can occur in different parts of the body but are most often found in the gastrointestinal tract, including the small and large intestines, stomach and  appendix, and in the lungs. NETs can also originate in the pancreas and rectum, and occasionally other areas.

Neuroendocrine tumors can produce excessive amounts of hormones. Symptoms may include abdominal pain, flushing, diarrhea, wheezing, heart palpitations, and skin rash.

Worldwide NET Cancer Awareness Day organizers hope that the campaign will raise awareness of these cancers and reduce the number of undiagnosed or misdiagnosed tumors. For example, many patients with gastrointestinal NETs are misdiagnosed with irritable bowel syndrome (IBS) or Crohn’s disease.

WNCAD Awareness Activities around the Globe

In addition to the virtual trip around the globe, people throughout the world will mark WNCAD in a variety of ways including: awareness walks in Canada and the United States;  information distributed in hospitals and shopping malls in Bulgaria; a flag flown over the U.S. Capitol in recognition of WNCAD; videos about NETs and the importance of early detection produced by organizations in Sweden, the Netherlands, and the United States; awareness conferences and informational events in France, Australia, and Germany; and national patient meetings with NET specialists in the United Kingdom and Norway.

Building on the First Year’s Success

In its first year, the campaign received more than 5,000 online signatures to the WNCAD Proclamation, and an additional 2,000 signatures in print.  The Proclamation is available in 9 languages:  Bulgarian, Chinese, English, French, German, Norwegian, Polish, Spanish, and Swedish.  People are urged to continue to sign the proclamation to help the campaign reach its next goal of 10,000 signatures.

The campaign’s Facebook page has over 1,700 fans from more than 50 countries, including Italy, Russia, France, Indonesia, Australia, Mexico, India, Sweden, Canada, United States, United Kingdom, and the Netherlands.

About the Campaign Organizers and the Zebra Mascot

Worldwide NET Cancer Awareness Day is organized and run by the WNCAD Alliance, an informal partnership between NET organizations from across the globe that is dedicated to raising awareness about NET cancers worldwide.  The WNCAD Alliance consists of Partners, Supporters and the World NET Community.  The campaign organizers welcome new groups around the world that are interested in supporting and advocating for people with NETs, and can also help people looking to start a new NET group in countries where none exist.

The zebra mascot is derived from the campaign’s zebra-striped logo to remind people, “when you hear hoofbeats, think zebras.”  Medical school students in some countries are taught, “When you hear hoofbeats, think horses, not zebras” to encourage them to think about the most likely and common cause of symptoms.  However, this approach risks that rarer diseases like NET cancers (”zebras”) will be overlooked because the symptoms are similar to those of more common diseases such as Crohn’s, IBS, asthma or rosacea (”horses”).  

Additional information about the campaign and a press kit is available on www.netcancerday.org .

For further information, contact:

Asia Pacific:
Bill Claxton, williamc@cnets.org, +65-9012-4327

Australasia:
John Leyden, MD, info@unicornfoundation.org.au, +61-1300-CURE-NETS

Bulgaria
Teodora Kolarova, teodora.kolarova@prnet.bg, +359-2-483-483-5

Canada:
Pierrette Breton, info@cnetscanada.org, +1613-728-5743

Europe/United Kingdom:
Maia Sissons, maia@netpatientfoundation.org, +44-7595068998

France:
Pascal Louw, pascallouw-toutvabien@yahoo.fr, +33(0)660587248 

Germany:
Katharina Mellar, info@netzwerk-net.de, +49-0911-25-28-999

The Netherlands:
Carmen Miranda-Kleinegris, info@net-kanker.nl, +31(0)725712919

Norway:
Tore Aasbu, aasbu@carcinor.no, +47-99-721-251, +47-22-20-03-90

Sweden:
Agneta H-Franzen, info@carpapatient.se, +46-70-5955814

United States, Eastern Time:
Grace Goldstein, ggoldstein@carcinoid.org, +1-888-722-3132
Maryann Wahmann, carcinoidaware@aol.com, +1-866-850-9555

United States, Pacific Time:
Kari Brendtro, kari@nanets.net, +1-360-314-4112

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