Raising awareness of neuroendocrine cancers around the world

NET Cancer Day

November 10

October 12
2010

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

NEW YORK, Oct. 12 /PRNewswire/

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

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

SOURCE The Carcinoid Cancer Foundation

September 17
2010

Governors of Nebraska & Mississippi Declare November 10th NET (Neuroendocrine Tumor) Cancer Awareness Day

The World NET Community thanks Dave Heineman, Governor of the State of Nebraska, and Haley Barbour, Governor of the State of Mississippi, for proclaiming Wednesday, November 10, 2010 as Worldwide NET Cancer Awareness Day.  In their proclamations both governors encourage patients, caregivers, healthcare professionals, as well as the wider community to raise awareness about NET cancers and the need for timely diagnosis and access to optimal treatment and care.

Learn more at Carcinoid Cancer Foundation.

September 8
2010

Treatment of neuroendocrine tumours discussed at Belfast conference

From BBC News:

Treatment of neuroendocrine tumours is discussed

Up to 400 people have been taking part in a conference in Belfast looking at the research and treatment of a rare, but fast-growing type of cancer.

Neuroendocrine tumours are the fastest growing cancer group worldwide.

The three-day conference is the first time patients, doctors and scientists have come together under one roof in the UK to discuss their treatment.

Belfast’s Royal Victoria Hospital has one of only two diagnostic labs for this type of tumour in UK.

Neuroendocrine tumours are cancers of the interface between the endocrine (hormonal) system and the nervous system.

They occur most commonly in the digestive system but can occur in other parts of the body.

May 26
2010

Proclamation Heralds Worldwide NET Cancer Awareness Day

Carcinoid Cancer Foundation (CCF) – To raise greater awareness of neuroendocrine tumor (NET) cancers the first annual Worldwide NET Cancer Awareness Day is being planned for Wednesday, November 10, 2010.  In preparation for this unique day, a proclamation has been created by the World NET Community Steering Committee.  The World NET Community encourages “patients, caregivers, healthcare professionals, as well as the wider community, to join with us as we work together to raise awareness about NET cancers and the need for timely diagnosis and access to optimal treatment and care.”

Representing 11 countries and 4 continents, the World NET Community Steering Committee brings together NET cancer and carcinoid support and advocacy groups from around the world.  Pictured below are the Steering Committee members.

Bottom row, left to right:

Grace Goldstein, The Carcinoid Cancer Foundation (CCF), United States

Katharina Mellar, Bundesweites Netzwerk Neuroendokrine Tumoren (NeT) e. V., Germany

Maryann Wahmann, Carcinoid Cancer Awareness Network (CCAN), United States

Agneta H-Franzen, CARPA (The Carcinoid Patient Association), Sweden

Inge Engle, Bundesorganisation Selbsthilfe NeuroEndokrine Tumoren e. V., Germany

Maureen Coleman, Carcinoid-Neuroendocrine Tumour Society – Canada (CNETS-Canada), Canada

John Leyden, MD, The Unicorn Foundation, Australia

Evgenia Adarska, APOZ and Friends, Bulgaria

Tore Asbu, CarciNor, foreningen for personer med nevroendokrin kreft, Norway

Top row, left to right:

Jaroslaw Cwikla, MD, Stowarzyszenie Pacjentow Osob Wspierajacych Chroych na Guzy Neuroendokrynne, Poland

John Hogervorst, Stichting Doorgang, Netherlands

William Claxton, Carcinoid & Neuroendocrine Tumor Society (CNETS SG) Singapore

Robert Wahmann, Carcinoid Cancer Awareness Network (CCAN), United States

Kari Brendtro, NANETS (North American NeuroEndocrine Tumor Society), United States

Maia Sissions, NET Patient Foundation: Incorporating Living with Carcinoid, United Kingdom

Catherine Bouvier, NET Patient Foundation: Incorporating Living with Carcinoid, United Kingdom

Ralitsa Bashliyska, MD, APOZ and Friends, Bulgaria

An early version of the Proclamation was signed by all who attended the Carcinoid Cancer Foundation’s Symposium for patients, family, friends, and healthcare professionals, “Determining Molecular Signature:  A Guide for Targeted Therapy of Neuroendocrine Tumors,” a presentation by Michael J. Demeure, MD, MBA, on his cutting-edge research, at Mt. Sinai Hospital in New York City in April.  Proclamations will be signed at upcoming events for carcinoid and neuroendocrine tumor (NET) cancer patients worldwide.

To read other Carcinoid Cancer Foundation blogs, please visit www.carcinoid.org.

March 16
2010

Worldwide NET Cancer Awareness Day

Carcinoid Cancer Foundation (CCF) – An extraordinary, first of its kind event is planned for November 10, 2010: Worldwide NET (neuroendocrine tumor) Cancer Awareness Day.  Leaders of carcinoid/NET patient support and advocacy groups from throughout the world have been brought together by Novartis Oncology to help generate greater awareness of these rare cancers.

The international Steering Committee for WNCAD is comprised of the following individuals and organizations:

John Leyden, MD, The Unicorn Foundation, Australia, http://www.unicornfoundation.org.au/index.htm

Evgenia Adarska, APOZ and Friends, Bulgaria http://www.apoz.eu

Maureen Coleman, Carcinoid-Neuroendocrine Tumour Society – Canada (CNETS-Canada), http://www.cnetscanada.org/

Inge Engle, Bundesorganisation Selbsthilfe NeuroEndokrine Tumoren e. V., Germany, http://www.net-shg.de/ Website translated into English: http://bit.ly/cb8MGO

Katharina Mellar,  Bundesweites Netzwerk Neuroendokrine Tumoren (NeT) e. V., Germany, http://www.glandula-net-online.de/cms/front_content.php Website translated into English: http://bit.ly/bVp8cA

John Hogervorst, Stichting Doorgang, Netherlands, http://www.doorgang.nfk.nl/ Website translated into English: http://bit.ly/a2wXUD

Tore Aasbu, CarciNor foreningen for personer med nevroendokrin kreft, Norway, http://www.carcinor.no/ Website translated into English: http://bit.ly/bZ7u6X

Jaroslaw Cwikla, MD, Stowarzyszenie Pacjentow Osob Wspierajacych Chroych na Guzy Neuroendokrynne, Poland http://bazy.ngo.pl/search/info.asp?id=108562 Website translated into English: http://bit.ly/bCZBQT

William Claxton, Carcinoid & Neuroendocrine Tumor Society (CNETS SG) Singapore http://www.cnets.org/index.htm

Agneta H-Franzen, CARPA (The Carcinoid Patient Association), Sweden http://www.carpapatient.se/eng_index.asp

Catherine Bouvier and Maia Sissons, NET Patient Foundation: Incorporating Living with Carcinoid, United Kingdom, http://www.netpatientfoundation.com/

Grace Goldstein, The Carcinoid Cancer Foundation, United States http://www.carcinoid.org

Kari Brendtro, NANETS (North American NeuroEndocrine Tumor Society), United States, http://nanets.net

Maryann and Robert Wahmann, Carcinoid Cancer Awareness Network (CCAN), United States http://www.carcinoidawareness.org/

The Committee has been working on a proclamation for the day, a logo, a dedicated website for WNAD (thanks to William Claxton of CNETS Singapore), and a series of events that will take place throughout the world to bring about greater awareness of these rare cancers.

Silja Chouquet, owner and CEO of whydot GmbH http://www.whydotpharma.com/, an agency that specializes in social media consulting, coaching and training, is assisting the Steering Committee with social media for Worldwide NET Awareness Day. Her fields of expertise are the creation of patient-focused social media communications and marketing campaigns. Ms. Chouquet’s passion for helping patients was evident when she gave a presentation to the Steering Committee at a meeting in Berlin on March 10th about how neuroendocrine cancer patients could use social media, such as Facebook, Twitter, blogs, e-newsletters, and online forums, to connect with each other and to bring about greater awareness of their rare cancers.

More information to follow!

To read other Carcinoid Cancer Foundation blogs, please visit www.carcinoid.org.

March 14
2010

Carcinoid Cancer Foundation Thanks Silja Chouquet

Carcinoid Cancer Foundation (CCF) – During a recent meeting in Berlin of the international Steering Committee for Worldwide NET Cancer Awareness Day (WNCAD) on November 10, 2010, Grace Goldstein of the Carcinoid Cancer Foundation had the opportunity to hear a fascinating presentation by Silja Chouquet, owner and CEO of whydot GmbH, an agency that specializes in social media consulting, coaching and training. Her fields of expertise are the creation of patient-focused social media communications and marketing campaigns. Ms. Chouquet’s passion for helping patients was evident when she talked about how neuroendocrine cancer patients could use social media, such as Facebook, Twitter, blogs, e-newsletters, and online forums, to connect with each other and to bring about greater awareness of their rare cancers.


Silja Chouquet, social media expert, patient advocate, and CEO of whydot GmbH

In her blog, whydotpharma http://www.whydotpharma.com/, she writes: “The Internet holds the power to profoundly change the way healthcare is delivered. Millions of patients, caregivers and physicians turn to the Internet every day to look up the latest information on important health topics and find support from like-minded people.”  Pharmaceutical companies, she says, have a unique opportunity to show patients how much they care by being open and transparent.  Ms. Chouquet believes that “a pharma company wishing to use social media to improve patient outcomes can only do so successfully if it manages to build trust, credibility and collaboration with the online community first.”

On behalf of the Carcinoid Cancer Foundation, Ms. Goldstein would like to thank Ms. Chouquet for “her extremely generous offer to help the carcinoid/NET community with social media for Worldwide NET Cancer Awareness Day.”  Ms. Goldstein notes that Ms. Chouquet has “a very large following within the European and international social media and healthcare communities and her outreach to the rare disease community will have a huge impact in helping obtain greater exposure for Worldwide NET Awareness Day.”

Ms. Choquet is cofounder, with Andrew Spong, of the Healthcare Social Media Europe community http://www.hcsmeucamp.com/, an organization of more than 140 healthcare bloggers, Twitterers, and social media users in Europe and the United States.  These dedicated individuals share “a conviction that social media has the potential to augment the targeting of medical research, improve the quality and delivery of care, and advance patient education and empowerment.”  They are holding the first hcsmeu conference on March 31st in Berlin. The event is free and, says Ms. Chouquet, “We would be thrilled to have as many interested people, in particular patients, attend the event.”  See their website for details.

Visit Ms. Chouquet’s blog, find her on Twitter at @whydotpharma or on Facebook and LinkedIn at Silja Chouquet. Follow her musical choices at http://blip.fm/Silja.

You can also follow the Carcinoid Cancer Foundation on Twitter @CarcinoidNETs.

To read other Carcinoid Cancer Foundation blogs, please visit www.carcinoid.org.