NET Cancer Day
Feb 19 2014
As part of the International Neuroendocrine Cancer Alliance’s mission to raise awareness of NET cancer among the healthcare community as well as the general public, we are pleased to announce the launch of the first ever Global NET Patient Survey! Through this survey NET cancer patients have a unique opportunity to share with the world their experiences with and perspectives on living with NET.
By completing the online survey you can help us bring to light the need for greater global awareness and education about NET cancer. As part of the survey, participants will have the chance to share their insights on the following topics:
• The journey to a NET diagnosis
• Living with and managing NET
• Information and resources about NET that are available
Please help us increase education and awareness about NET worldwide! To complete the Global NET Patient Survey, please log on to: http://NET.survey-source.com/
The survey will take approximately 25 minutes to complete. Any information that is disclosed will be treated in the strictest confidence and no answers will be attributed to individual respondents. We sincerely value your input in this important survey and hope you can participate.
The Global NET Patient Survey is provided by INCA (formerly the Worldwide NET Cancer Awareness Day Alliance) in collaboration with Novartis Oncology.
© 2013 Novartis Pharmaceuticals Corporation, used under license by INCA and its member organizations
Jan 22 2014
The Canadian Cancer Research Society, in partnership with CNETS Canada, is awarding $120,000 to Dr. Nahum Sonenberg and his team of researchers from McGill University to pursue new ways to treat pancreatic neuroendocrine tumors, the second most common type of cancer affecting the pancreas. Read more
Dec 13 2013
The Caring for Carcinoid Foundation (CFCF) in the United States has received an extraordinary $1 million challenge grant from the Goldhirsh-Yellin Foundation. This challenge is designed to accelerate and expand a promising and exciting research portfolio, with the goal of new treatments and an eventual cure for carcinoid and other neuroendocrine tumors (NET).
Elizabeth Goldhirsh-Yellin is a young wife and mother, recently diagnosed with a carcinoid tumor. She is committed to extending her philanthropy and her attention to neuroendocrine cancer research.
The Goldhirsh-Yellin Foundation has issued a challenge to friends and supporters of CFCF: each new or increased gift will be matched dollar for dollar, and every gift increased by 50% or more will be matched two to one – doubling and tripling the impact of support. CFCF describes this as “an incredible opportunity to do everything we can to test out possible breakthrough therapies as we continue our aggressive quest for cures.”
The Carcinoid NeuroEndocrine Tumour Society Canada has launched the first comprehensive Canadian NET cancer patient and caregiver education handbook in interactive soft copy format. This handbook is the result of many months of work and is a valuable source of information not only for patients but also for caregivers, health care providers, politicians, civil servants, funders and the general public to inform them on this uncommon, often undiagnosed or misdiagnosed form of cancer.
The French version is in progress and hard copies in English and French will be available in January 2014.
Download a copy of the 82-page handbook HERE.
Dec 12 2013
· The South Australian Cancer Pathway for Gastroenteropancreatic NETs Launched on November 13th at Major Oncology Meeting in Australia (COSA ASM www.cosa2013.org)
The Unicorn Foundation is proud to announce the launch of the South Australian Gastroenteropancreatic NETs (SA GEP NET) Cancer Pathway during the Clinical Oncology Society meeting by the Hon Jack Snelling MP, South Australian Minister for Health and Aging.
The SA GEP NET pathway was supported by the Unicorn Foundation and involved a wide variety of health professionals, NET specialists and consumers.
The Unicorn Foundation is particularly thankful for the efforts of Koli Ali (NETs project nurse), Prof Tim Price and Prof Dorothy Keefe for their enthusiasm and input into this important clinical pathway.
To view this pathway, CLICK HERE.
· Sunitinib (Sutent) is Now available on the Pharmaceutical Benefits Scheme for Australian Pancreatic Neuroendocrine Tumor Patients
After many months of lobbying and advocating for equitable access to sunitinib (Sutent), Dr. John Leyden, Chairman of the Unicorn Foundation, is happy to announce that the Pharmaceutical Benefits Advisory Board has finally listed the drug for the treatment of metastatic pancreatic neuroendocrine tumor patients. This is a significant result for all Australian patients with pancreatic NETs as previously the costs of this drug have been prohibitive and remained out of reach of nearly all patients. The equitable and timely access to treatments for neuroendocrine cancer patients remains an important focus for the International Neuroendocrine Cancer Alliance (INCA) and its member groups.
Nov 9 2013
In recognition of Worldwide NET Cancer Awareness Day on November 10, NorCal CarciNet is hosting a one-hour, free webinar. Here’s a great opportunity to hear from 3 of the leading specialists in carcinoid/NET cancer treatment on NET CANCER DAY: Professor Dr. Richard P. Baum, Bad Berka, Germany; Dr. Eric Liu, Vanderbilt University, Tennessee; and Dr. Thomas O’Dorisio, University of Iowa. The webinar will be moderated by Josh Mailman, President of NorCal CarciNET and Chair of Patient Advocacy for the Society of Nuclear Medicine, and Bill Claxton, founder of CNETS Singapore.
To reach as wide an audience as possible, the webinar will start at 7 am Pacific Time. Space is limited to 500 viewers/participants with dial in for up to 150 people with local non-toll-free numbers in 23 countries for those who will not be at a computer and would like to listen to the webinar.
To join, please register here: http://norcalcarcinet.org/index.php/netcancer-day-webinar
It is with deep sadness that INCA has learned of the passing of Agneta H-Franzen, Chairperson of Carpa, the Swedish NET patient organization, and a founding member of the International Neuroendocrine Cancer Alliance. Agneta was a passionate advocate for carcinoid/neuroendocrine cancer patients in Sweden and around the world. Her colleagues valued her friendship, professionalism, and dedication to ensuring that NET cancer patients received the best care possible. We will miss her passion and compassion. From all of us at INCA, we extend our deepest sympathies to Agneta’s family, friends, and colleagues, and to all who were part of her Carpa family for so many years. We will miss you, Agneta!
Sep 10 2013
On August 31, 2013, the carcinoid/neuroendocrine tumor (NET) community throughout the world lost one of its most passionate advocates, Maureen Coleman, Founding Past President of CNETS Canada and a founding member of the International Neuroendocrine Cancer Alliance (INCA).
After retiring from teaching, Maureen, a NET cancer patient diagnosed in 2000, dedicated her time to supporting other NET cancer patients. She initiated the first support meeting of Canadian NET patients in Toronto, Ontario in May of 2001. During the next six years, along with this small group of patients, she developed the foundation for the organization that became incorporated as CNETS Canada in 2007. She served as President of CNETS Canada from its incorporation until December 2012.
Maureen had an enormous impact on the NET cancer community – touching the lives of individuals and their loved ones; making huge strides in funding NET cancer research in Canada; and bringing awareness of these rare diseases to Health Canada authorities, other political officials, physicians, and the public. She envisioned a CNETS Without Borders, an international network of patient support groups which act locally, while cooperating globally. Thus was borne CNETS Singapore and her global vision was later realized in the creation of INCA, which initially began as the informal organization, the World NET Community.
We will miss her ever-present smile, her dedication and commitment to the NET cancer community, her desire to help those who are newly diagnosed as well as those living with NETs for many years, her knowledge, her compassion, and her vision. But she will always remain with us because we will each work a little harder to ensure that what she envisioned for the NET cancer community will be her legacy.
We extend our deepest sympathies to Maureen’s family, friends, and colleagues. Please CLICK HERE for information about making donations in Maureen’s memory and to sign the memorial book for her family. We welcome all to express their condolences and memories of Maureen on the NET Cancer Day Facebook page: https://www.facebook.com/netcancerday. And visit the CNETS Canada website to read the organization’s moving tribute to Maureen : http://www.cnetscanada.org/.
Jul 29 2013
The International Neuroendocrine Cancer Alliance (INCA) announced its new name, the official one to be used by the organization, which has committed to being the global advocate for neuroendocrine cancer patients. Envisioning a world where all neuroendocrine cancer patients get a timely diagnosis, the best care and ultimately a cure, INCA (formerly known as the Worldwide NET Cancer Awareness Day Alliance) was established in 2010 in Berlin, Germany. The key focus of the Alliance, whose current members are NET patient groups and advocacy organizations from Asia, Australia, Europe, and North America, is to raise awareness of neuroendocrine cancer in the healthcare community and throughout the general public.
“It is the passion to change things for the betterment of neuroendocrine cancer patients that drives us forward as a deeply committed team, to unite patient advocates from around the globe in this effort,” commented Grace Goldstein, President of INCA and Chief Operating Officer of the Carcinoid Cancer Foundation in New York, USA.
Encouraging early diagnosis by working collaboratively with the healthcare community and the public, the Alliance also recognizes universal access to high-quality multidisciplinary care and the dissemination of accurate and user-friendly information about neuroendocrine cancer as its top priorities.
INCA also serves as a global platform to support existing and new patient-focused neuroendocrine groups and advocacy organizations from around the world. By maximizing the resources of its current members and actively reaching out to new ones, INCA encourages sharing best practices and experience, which is crucial in the context of rare cancers.