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Welcome to INCA Special World NET Cancer Day Newsletter!
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INCA World NET Cancer Day 2017 Newsletter - November News Update

Highlight: World NET Cancer Day 2017 Around the Globe!

#LetsTalkAbout NETs reached millions around the globe:  INCA’s 2017 NET Cancer Day campaign is reported to have the highest reach so far. This year the hashtag #letstalkaboutnets gained over 4.8 million impressions in Twitter. 100 000 Let's Talk about NETs cups were distributed in cafes, hospitals, and special events around the world via the INCA membership network. Thousands edited their Facebook profile pictures with the NET Cancer Day frame to show support: On 10 November 2017 INCA called for NET Cancer Day supporters to add the NET Cancer Day frame to their profile pictures on social media and more than 2,200 Facebook users answered the call. 
 

AMEND UK on World NET Cancer Day 2017 
APTED France on World NET Cancer Day 2017
APOZ Bulgaria on World NET Cancer Day 2017
Associazione Italiana Tumori Neuroendocrini Italy on World Cancer Day 2017
CNETS Canada on World NET Cancer Day 2017
CNETS India on World NET Cancer Day 2017
The Carcinoid Cancer Foundation on World NET Cancer Day 2017
CarciNor Norway on World NET Cancer Day 2017
Netzwerk Neuroendokrine Tumoren (NeT) e. V. Germany on World Cancer Day 2017
vzw NET & MEN Kanker Belgium on World Cancer Day 2017
NET Patient Foundation UK on World Cancer Day 2017
NET Patient Network Ireland on World NET Cancer Day 2017
NET Research Foundation USA on World NET Cancer Day 2017
Pheo Para Alliance USA on World Cancer Day 2017
Unicorn Foundation Australia on World Cancer Day 2017
Unicorn Foundation New Zealand on World Cancer Day 2017
CONTENTS:
INCA News
INCA Members' News
INCA Partners' News
Medical News
INCA News

10th November World NET Cancer Day:
Let’s Talk about Unmet Needs in the Global NET Patient Community


 

In 2017, INCA’s “Let’s Talk about NETs” campaign focuses on unmet needs in the NET community. These needs were identified via an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries. The survey results were further enriched through in-depth interviews with 10 clinical leaders and nine patient advocate leaders from around the globe. The assessment conducted by INCA identified significant unmet needs: in the provision of information to patients at diagnosis, and access to the latest diagnostics and to essential services and multidisciplinary care. A lack of patient involvement in research strategies and clinical trials also transpired. 

The INCA White Paper was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member. Ron Hollander, INCA President, explains that the survey lays a foundation for future focus. “The INCA White Paper documents and quantifies NET patients’ unmet needs so that as a global NETs community we can identify priorities and move forward to bridge these gaps and improve patient outcomes.”

On INCA website you will find the White Paper on Unmet Needs in Information, Access to Care, and Research in NETs,  motiongraphics illustrating the messages of World NET Cancer Day and the results of INCA survey as well as infographics with all relevant information.  

INCA marked NET Cancer Day with over 200 physicians from around Europe and beyond

























INCA marked NET Cancer Day at prIME oncology Masterclass on NETs with over 200 physicians from around Europe and beyond.  The prIMEMasterclass in Neuroendocrine Tumors was held in Amsterdam, Netherlands on 10/11/2017-11/11/2017. INCA Executive Director, Teodora Kolarova, shared INCA experience in patient advocacy and presented some insights from the White Paper on  Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals

INCA White Paper is based on an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries, which was further enriched through in-depth interviews with 10 clinical leaders and nine patient advocate leaders from around the globe. 


More information on INCA website
 

INCA Members' News

APTED launched the NETathlon video on NET Cancer Day

APTED, France, shared on the World NET Cancer Day a video of its big event this year – the NETathlonfrom from 22 to 25 June 2017 at the historical Omaha Beach, Normandie, France.  APTED patient community gathered for informational workshops and physical activities that reduce stress and fatigue.  

Watch the video on INCA website

AMEND UK Publishes Article in Endocrine-Related Cancer Medical Journal

AMEND CEO, Jo Grey and AMEND Counsellor, Kym Winter, have had their invited Review for the medical journal, Endocrine-Related Cancer (ERC), accepted for publication.  The Review, entitled, Prognosis and Quality of Life in Multiple Endocrine Neoplasia Type 2 (MEN2), takes a unique look at the advances made since the development of the genetic test for the RET mutation that causes MEN2 25 years ago.  The authors draw on real-life patient stories and experiences to help illustrate these advances as well as the continuing challenges in the care of these complex genetic neuroendocrine tumour syndrome patients.  The authors call for renewed efforts to centralise care for this patient community within expert centres, to provide routine psychological help, and to increase levels of research into the conditions.  

AMEND also announced a new Alliance of patient groups dealing with the genetic NET syndromes, Multiple Endocrine Neoplasia (MEN) who are shortly to launch a survey of MEN patients throughout Europe.  The European MEN Alliance (EMENA) is comprised of patient advocacy groups and medical experts in the EEA, specifically, UK, Germany, Belgium, The Netherlands and Italy.  EMENA will be surveying patients to gauge the patient perception of the care they receive for their condition.  This will also be followed up with additional small surveys relating to quality of life and to paediatric care.
If there are any European INCA members (or non-members) who provide support to MEN patients but who are not aware of this initiative, or if you know of any groups who would be interested in being involved, please get in contact with Jo Grey, AMEND CEO (jo.grey@amend.org.uk).


More information on INCA website

Carcinoid Cancer Foundation USA: Go Zebra-Striped on social media
to support World NET Cancer Day 

This year, the Carcinoid Cancer Foundation USA, initiated on World Cancer Day a call among all patients, families and friends to Go Zebra-Striped on social media to raise awareness on NETs.  They offered a photo filter to enable supporters "to zebra" their photos on social media.  The call was meant to encourage medical professionals to consider diagnoses beyond the most common ones: When you hear hoof beats, you may think it’s a horse, but sometimes it’s a ZEBRA, the rare and unexpected possibility! 

More information from Carcinoid Cancer Foundation USA

World NET Cancer Day a Success in Canada

On Friday, November 10th, 2017 CNETS Canada’s partner locations and volunteers helped raise NET Cancer Awareness by distributing over 10,000 “Let’s Talk About NETs” cups, postcards, posters and brochures across Canada! CNETS Canada also promoted NET Cancer Awareness through social media, with over 30 Facebook and Twitter posts. The 2017 INCA Infographics on NET Cancer Day, Information, Access and Research, reached over 20,000 impressions!

Meanwhile on World NET Cancer Day, CNETS Canada announces the recipients of 2017 MAUREEN COLEMAN AWARD.The late Maureen Coleman was the Founder and Past-President of CNETS Canada who passed away in 2013 from NET cancer. Maureen was a remarkable woman with great vision, passion and compassion and she made a significant contribution to the NET patient community. In her honour, CNETS Canada established the Maureen Coleman Award. This Award recognizes exemplary dedication to the NET patient community and is open to Canadians whose work or dedication has had a significant impact on the NET cancer community, in line with the Mission and Vision of CNETS Canada. CNETS Canada sought the input of our community to nominate individuals for this award. The 2017 Maureen Coleman Award goes to two individuals who have embodied the passion and dedication of Maureen Coleman. On behalf of the Canadian NET patient community and CNETS Canada, we are delighted to announce Daniel Opoku and Dr. Eric Turcotte as the recipients of the Fourth Annual Maureen Coleman Award.

More information about NET Cancer Day 2017 in Canada

More about 2017 MAUREEN COLEMAN AWARD recipients 

CNETS India organized Facebook session with experts on World NET Cancer Day

CNETS India organized Facebook session with experts on World NET Cancer Day.  Lots of people could ask their questions and discuss NETs with NET Experts Dr Priya Tiwari, Dr On Lakhani, Dr Vivek Saraf and Dr Sugandha Dureja who conducted a very informative live Facebook session.  

Watch the sessions on Facebook 

On NET Cancer Day 2017, NET Patient Foundation published a new report
on improving outcomes for patients with NETs in Scotland



On the World NET Cancer Day 2017, the NET Patient Foundation publishes a new report focused on improving outcomes for patients with NETs in Scotland. This follows the success of our Chapter Ten report last year, which made recommendations for inclusion in the Cancer Task Force National Strategy for England to improve outcomes for rare and less common cancers. This year’s report entitled ‘Widening the NET’, outlines ‘ambitions’ and ‘actions’ to ensure that progress continues to be made in Scottish NET care. It is the first report of its kind focused solely on Scottish patients with a malignant NET and is based on interviews with medical experts and patients from around the country.

More from NET Patient Foundation

NET Patient Day in Dublin


NET Patient Network Ireland united NET patients and NET medical professionals for its 5th annual NET Patient Day on 18 November 2017 in Dublin. A wonderful sense of community could be felt among the 120 Irish NET patients and their family and friends, who have gathered for the day and the relationship with their NET healthcare professionals, proved to be very inclusive and built on partnership.

Prof. Donal O’Shea gave an overview of NETs and an update on St. Vincent's University Hospital and the Centre of Excellence. Dr. Staffan Welin from Uppsala in Sweden talked about NET innovative treatments. Dr. Derek Power and Mr Críostóir Ó Súilleabháin from Cork spoke about NET treatments and services in their region. Prof. Dermot O’Toole discussed NETs in Ireland and how the national system is progressing. INCA Executive Director Teodora Kolarova presented the latest INCA research on Unmet needs in the global NET community, and reassured Irish patients that their challenges and issues are common to many people living with NETs around the globe. An open discussion followed to exchange insights from doctors’ and patients’ perspectives. The meeting closed with the remark of one of the NET patients: "Today I will walk out of this room feeling more confident that I know how to deal with my disease. Thank you for the true support you give us." 

Videos of the talks and Q&A session will be available on NET Patient Network's YouTube channel in the next few weeks.

More information from NET Patient Network Ireland

NETRF-organized Indianapolis Patient & Caregiver
Education Conference gathered patients and caregivers
across the country



On 11 November 2017 NET Research Foundation USA organized Indianapolis Patient & Caregiver Education Conference gathering NET patients and caregivers across USA.

Since NETRF’s first conference in 2009, more than 3,000 attendees have participated in the events, and they continue to provide a vitally needed opportunity for education and fellowship. To ensure there are no financial barriers to participation, all conferences are offered free of charge. The NET Research Foundation typically holds four Patient & Caregiver Educational Conferences per year.While the agenda for each conference varies based on patient feedback and presenter expertise and availability, all seminars feature a panel of leading clinicians in the fields of oncology, surgery, nutrition, and psychosocial wellness.

More information from Conference videos from NETRF 

Pheo Para Alliance made viral a NET Cancer Day video with Attiya Khan’s story 


On this year’s NET Cancer Day Pheo Para Alliance called for support in raising awareness on NETs by promoting Attiya Khan’s video "Pheochromocytoma: The Last Episode" with her story of long years of misdiagnosis as doctors couldn’t figure out what she had, and most attributed her symptoms to panic attacks. 

Watch this amazing 9-minute video and share it with #LetsTalkAboutNETs hashtag

World NET Cancer Day 2017 in Australia


November 10 is World NET Cancer Day, with the goal to raise awareness about Neuroendocrine (NET) cancers in the hope for earlier diagnosis for sufferers and it became an incredible day in Australia thanks to all Unicorn Foundation loyal supporters and friends. 

Over 65 cafes and even more businesses supported Unicorn Foundation and 30,000 branded coffee cups were distributed with the message #letstalkaboutnets. With the help of fantastic ambassadors actress Michelle Monaghan and actor and musician Craig McLachlan as well as news outlets around the country sharing patient stories, Unicorn Foundation was able to reach millions of people with the campaign message. “It was amazing to see our patients get involved from all corners of the country, enlisting their local communities to help them with the cause, as well as raising some money along the way for research”, said the Unicorn Foundation team on their website thanking everybody who was involved. 

Watch a short video of some of the highlights of the day on Unicorn Foundation Australia website

Skechers Womens 6k+12k: Dressing up running for raising awareness on NETS

Unicorn Foundation New Zealand inspired a wonderful bunch of ladies to dress up and run in the Skechers Womens 6k+12karound the Auckland waterfront on 19 November 2017 to raise awareness on NETs and spread the word about the foundation.  It was cold, wet and busy but they all crossed the finish line still smiling. 

More information from Unicorn Foundation New Zealand 

INCA Partners' News

Novartis supported World NET Cancer Day through
promoting NET awareness and patient advocacy 

Worldwide NET Cancer Awareness Day is more than an awareness day.  Today is a reminder of the patients who give us purpose and inspiration each day of the year. We look forward to continued service to the NET community” – these were some of the messages promoted on social media by Novartis by distributing educational videos and bringing forward the news resource website http://netcancerexperience.com/ containing information and advice on NETs, patient stories in collaboration with INCA.

An interview with INCA President Ron Hollander was featured in the communication campaign to launch a new series “Novartis Connects: Conversations with Patient Advocates”, which will showcase stories from the patient advocacy groups working with Novartis.

We envision a world where all neuroendocrine cancer patients have access to a timely diagnosis, the best care, and ultimately a cure, no matter where in the world they live”, said INCA President in the interview talking about the global organization’s vision and passion to empower NET patients. 


Read the interview with Ron Hollander

Watch the video with educational information about carcinoid syndrome, featuring testimonials from patients and advocates discussing their experiences with the disease

Ipsen supports awareness of Neuroendocrine Tumors (NET)
and the NET Cancer Day on November 10, 2017

Ipsen continuously supports the NET Cancer Day initiative led by INCA and its members. This year, Ipsen leveraged its worldwide presence to raise awareness by installing 59 Life-size figures of zebras in public places and hospitals in 57 participating cities in 19 countries around the globe! Passers-by were encouraged to take a ‘zelfie’ and publish their photos on social media with the hashtag #NETCancerDay as a way of supporting the cause and raising awareness for the disease. Participants were asked to colour in a large map of the world illustrated with zebra stripes as a further show of support and solidarity with the initiative. Additional information was available at each location to raise awareness and an infographic explaining NETs was published on Ipsen’s website on the day.

More information on NETs from Ipsen
Medical  News

Patient-reported experience of the impact and burden of neuroendocrine tumors:
Oceania patient results from a large global survey


This new large survey, published in Asia-Pacific Journal of Clinical Oncology in the beginning of November 2017, was a self-reported global survey regarding NET knowledge/awareness, disease impact/management, interaction with medical teams, and desired improvements. One hundred thirty-eight patients (7% of the global study) in the Oceania region answered closed-ended questions using graded descriptors on their experience of living with NETs. The results reported show that the personal lives of patients were negatively impacted by NETs, including overall energy levels (72%, 99/138), emotional health (66%, 91/138), and finances (56%, 77/138). Eighty-one percent (22/27) of patients not currently working stated that their NET was the reason they were not employed. Of those still working, taking days off work (64%, 39/61), working reduced hours (44%, 27/61) and stopping work for a period of time (31%, 19/61) were the most frequently reported outcomes of having a NET.

More from Wiley Online Library

A Patient Survey on Neuroendocrine Tumors reported
at NANETS Annual Symposium


At the 10th North American Neuroendocrine Tumor Society (NANETS) Annual Symposium in Philadelphia, Mohid Khan and colleagues presented the results of a survey conducted in the United States, Germany and France involving 741 patients with neuroendocrine tumors.

The survey consisted of 12 multiple-choice questions to determine the physical, emotional, and informational challenges these patients face. The 741 surveys submitted included responses from 428 patients in the United States, 240 in Germany, and 73 in France. Feedback noted that anxiety was the most prominent emotion following their diagnosis, with 50-60% of patients reporting that feeling.Regarding their biggest challenges, patients reported fatigue as their biggest challenge followed by diarrhea, sleep disturbances, and pain.The survey also asked patients where they received their medical information about neuroendocrine tumors and the results were highly variable.  Internet was the main source of information, including the gathering of material for  neuroendocrine tumor/carcinoid websites and patient association websites. Information was also obtained from patient brochures and booklets.


More from Rare Disease Report

NETRF-funded researchers exploring the birth of a carcinoid cancer cell

Much about a carcinoid cancer cell remains a mystery. For that reason, NETRF funds research to understand how and why a neuroendocrine cancer cell comes to be. Two Harvard researchers are teaming up to explore important longstanding mysteries. 2017 NETRF Accelerator Award grantees, Qiao (Joe) Zhou, PhD, Harvard University, and Ramesh Shivdasani, MD, PhD, Harvard Medical School, are searching for fundamental answers about the origin of intestinal neuroendocrine cells and carcinoid tumors.The researchers will capitalize on exciting advances in stem cell biology, nuclear profiling, and genome editing to understand the differences between human carcinoid tumor cells and their normal counterparts, in an effort to find the irregularities that distinguish cancer cells from healthy ones. Drs. Zhou and Shivdasani also aim to identify the likely precursor cells (the cell of origin) that give rise to intestinal NETs in laboratory models.By understanding when and how things go wrong, the Accelerator Grant team hopes to identify the specific proteins or pathways that can be targeted with new or existing drugs. Such therapies will turn on or off cellular functions or communication in hopes of interrupting the production, survival, and proliferation of intestinal cancer cells.

More information from NETRF
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