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, www.neuroendocrine.org.au
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
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
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 https://www.carcinoid.org
Kari Brendtro, NANETS (North American NeuroEndocrine Tumor Society), United States, https://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, 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!