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One Month Until First Worldwide NET Cancer Awareness Day on November 10, 2010

1st Global Call-to-Action at www.netcancerday.org


News provided by

The Carcinoid Cancer Foundation

Oct 12, 2010, 10:48 ET

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NEW YORK, Oct. 12 /PRNewswire/ -- The World NET Community announces the first Worldwide NET Cancer Awareness Day on November 10, 2010 to raise awareness about cancers called neuroendocrine tumors (NETs) and the need for timely detection and diagnosis.  More than 90% of all NET patients are incorrectly diagnosed and initially treated for the wrong disease. Misdiagnoses or delayed diagnoses mean that NET patients are treated on average five to seven years for the wrong disease; often the correct diagnosis is not made until the disease has spread (metastasized).

The World NET Community, formed in Berlin in March 2010, is an international community of patient advocacy groups and NET organizations from around the world working together to raise awareness about NET cancers on a global level.

Global Campaign and Call-to–Action:  Sign, Share, Follow & Fan

To reach and mobilize a global audience, the campaign organizers have created an interactive website (www.netcancerday.org) that features a Proclamation that visitors are encouraged to digitally sign to show their support for the cause and the people they love.  The site also includes information about neuroendocrine tumors, campaign news and photos and a calendar highlighting scores of events planned across the globe on or around November 10, 2010.  Through a dynamic social media campaign, including Tweets, blogs and a Facebook page dedicated to Worldwide NET Cancer Awareness Day, people from around the world are encouraged to log onto the website and join the call to action  

  • Sign the Worldwide NET Cancer Awareness Day Proclamation
  • Share the Proclamation with friends by e-mail
  • Follow the Campaign on Twitter
  • Fan the Campaign on Facebook

Truly a global effort, the Proclamation has been translated into seven different languages (Bulgarian, Dutch, French, Norwegian, Polish, Spanish, and Swedish) to broaden the reach of the campaign messages.  

The website also offers other organizations a way to join the World NET Community, download campaign resources and post their own Worldwide NET Cancer Awareness Day events for more visibility.

Information about NETs

The incidence of neuroendocrine tumors (NETs) is on the rise globally.  While 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, which includes the small and large intestines as well as the stomach and appendix, and the lungs.  NETs can also originate in the pancreas and rectum, and occasionally from other areas.  

Neuroendocrine tumors, produce excessive amounts of hormones and include carcinoid syndrome, Zollinger Ellison syndrome, VIPomas, insulinomas gastrinoma, glucaginoma and somatostatinoma, among others.  Symptoms may include abdominal pain, flushing, diarrhea, wheezing, heart palpitations, skin rash, heartburn, and weight changes.

Worldwide NET Cancer Awareness Day organizers, including people with NETS, healthcare professionals and patient advocates, hope that the effort will raise awareness of these cancers and reduce the number of undiagnosed or misdiagnosed tumors.  For example, many patients with gastrointestinal carcinoid are misdiagnosed with Irritable Bowel Syndrome (IBS) or Crohn's disease.  

With increased awareness both in the healthcare and patient communities, it is hoped there will be an improvement in the availability and quality of diagnosis, treatment and care for NET cancer patients throughout the world.

About the Worldwide NET Cancer Awareness Day Steering Committee

Worldwide NET Cancer Awareness Day is an annual, awareness-raising event coordinated by the Worldwide NET Cancer Awareness Day Steering Committee at an international level, and by patient advocacy groups and NET organizations at national and local levels.  The Steering Committee includes leaders of organizations from Australia, Bulgaria, Canada, Germany, Norway, Poland, Singapore, Sweden, The Netherlands, the United Kingdom and the United States.  

For additional information, a global press kit is available on www.netcancerday.org and includes the following:

  • Backgrounder on why early detection and diagnosis of NETs is critical
  • Worldwide NET Cancer Awareness Day Proclamation
  • Fact sheet about NETs
  • List of Steering Committee members for Worldwide NET Cancer Awareness Day

For further information, contact:
Asia Pacific:

  • Bill Claxton, [email protected] , +65-9012-4327

Australasia:

  • John Leyden, MD,  [email protected], +61 1300 CURE NETS

Canada:  

  • Maureen Coleman, [email protected], 1-416-544-8467

Europe:

  • Maia Sissons, [email protected], +44 7595068998

Europe, Germany:

  • Inge Engel, [email protected], +49 30 21 47 39 81

Europe, Scandinavia:

  • Agneta H-Franzen, [email protected], +46 70 5955814

United States, Eastern Time:

  • Grace Goldstein, United States, [email protected], 1-888-722-3132 or 1-914-683-1001
  • Maryann Wahmann, United States, [email protected], 1-866-850-9555 or 1-516-781-7814

United States, Pacific Time:

  • Kari Brendtro, United States, [email protected], 1-360-314-4112

SOURCE The Carcinoid Cancer Foundation

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