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Welcome to the INCA Special NET Cancer Day Newsletter!
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INCA NET Cancer Day 2019 Newsletter - November News Update

Highlight: NET Cancer Day 2019 Around the Globe!

                        

12.3 million impressions across the major social media platforms in just three weeks – this is the combined value that  INCA NET Cancer Day social media campaign generated in 2019. We focused on access issues for NET patients and clinicians worldwide and our efforts resonated massively, inspired new followers and stirred conversation around the world. 

More than 200 000 people watched INCA Members videos addressing the key access issues that our NET community faces today. 

ACIAPO Argentina on NET Cancer Day
A.I. NET Vivere la Speranza Italy on NET Cancer Day
APOZ Bulgaria on NET Cancer Day
APTED France on NET Cancer Day
Carcinoid Cancer Foundation USA on NET Cancer Day 
CarciNor Nevroendokrin kreft Norway on NET Cancer Day
CNETS Canada on NET Cancer Day
NET ESPAÑA on NET Cancer Day 
CNETS India on NET Cancer Day 
NET Italy on NET Cancer Day 
NET Patient Foundation UK on NET Cancer Day
NET Patient Network Ireland on NET Cancer Day
PanCan Japan on NET Cancer Day
Unicorn Foundation Australia on NET Cancer Day
Vzw NET en MEN Kanker Belgium on NET Cancer Day
CONTENTS:
INCA News
NET Cancer Day Around the World
Medical News
INCA News

INCA Makes the World Talk About Access Challenges of NET Patients and Clinicians on NET Cancer Day 2019

This year’s access topic reached millions around the globe: INCA’s 2019 NET Cancer Day campaign was the biggest-ever as per the level of engagement and support reached.

The combined value of impressions across the four social media platforms deployed – Twitter, Facebook, Instagram and LinkedIn – for the period October 27th - November 15th, 2019 is 12.3 million. INCA, the home of NET Cancer Day, is privileged to be able to collaborare with member organizations, medical societies and institutions, partners, influencers, and the general public to speak with one voice. 

Facebook has shown to be the most active platform for @NetCancerDay gaining approximately 11.8 million weekly impressions throughout the campaign (1.8 million impressions daily total).

Twitter activity for the hashtag #letstalkaboutnets gained 3.6 million impressions and 3.35 million impressions for the hashtag #netcancerday. The INCA Twitter account @netcancerday gained 529k impressions throughout the NCD campaign. 

To help spread the word and to have more impact in a consistent manner, INCA developed a NET Cancer Day Toolkit offering key messages and visual content, as well as useful tips on media engagement and social media communication. INCA members from around the world came together in several video collages to highlight the value of equitable access to NET information, diagnostics, care and research for all, and the power of synergy, which can truly make a difference. #letstalkaboutnets

The First Offical Open Access Publication of the INCA Unmet Needs Survey Findings in the International Journal of Cancer

 


INCA is excited to announce that the paper "Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET healthcare professionals" was published in the esteemed Union for International Cancer Control (UICC) International Journal of Cancer. The Unmet Needs Survey was championed by INCA, working in close collaboration with the NET medical societies around the world. The survey findings were published just prior to World NET Cancer Day on November 10 to reinforce our efforts to raise awareness about the plight of neuroendocrine cancer patients.

“The results of this survey, which we think are the first of their kind, comparing the perceptions of patients and healthcare professionals, will form the basis for our important work moving forward. The key recommendations by the authors including improving correct and understandable patient information at diagnosis, improving access to diagnostics and theranostics, access to MDTs and specialist centres, greater education of nurses and HCPs and including patient input into research will continue to drive our collaborative work, as we strive to improve NET patient outcomes around the globe”- Simone Leyden, INCA President.

View the open-access publication, free for download and sharing here 

First World NET Forum 2020 on 10-11 March in Barcelona - Convened by ENETS in Partnership with the NET Medical Societies Around the World and INCA
 

INCA is proud to be associated with the first-ever World NET Scientific Forum to take place next year  in conjunction with the annual European Neuroendocrine Tumor Society (ENETS) Conference in March in Barcelona. INCA President, Simone Leyden has been actively involved in the Steering Committee, planning this inaugural meeting.

This global collaboration between INCA and the NET medical societies around the world is a testament to the productive, trusted and respected relationship we have, as we all strive to improve NET patient outcomes around the globe. We encourage you to forward on to all your medical teams and researchers for attendance, as the most up-to-date scientific research is presented across areas including:
•    Genomics
•    Basic Science
•    Epigenetics
•    CAR-T Cell
•    PRRT

The full program of the World NET Forum is available here. We look forward to a fantastic meeting that will also bring together our INCA members at the annual INCA Summit prior to the 1st World NET Forum.

More information about the event can be found on the ENETS website.

SCAN Concluded on November 30

The Survey of Challenges in Access to Diagnostics and Treatments for NET Patients (SCAN) has concluded on November 30th!

SCAN has been running since September 16th and has received responses from 60 countries around the world. More than 2350 NET patients, family members, friends and caregivers shared their experiences, and assessed the quality of care received, also noting areas in need of improvement. Approximately 500 healthcare professionals recorded their viewpoints on the current state of NET healthcare.  

What’s next? The collected data will be analyzed and processed, and we will start sharing insights in early 2020. Global data, as well as breakdowns by regions and countries, wherever possible, will give us valuable knowledge, which will help in the strive towards equitable access to healthcare for NET patients, no matter where they live.

With approximately 3000 respondents, this is the biggest global compendium of data about NETs so far. INCA would like to thank all of its member organizations, NET patient groups, NET patient advocates and supporters, as well as the medical societies around the world for their invaluable help in achieving this impressive coverage. We would also like to express our gratitude to all SCAN respondents for their time and trust in us. Together, with the full responsibility of this knowledge, we will build a stronger NET community.

INCA Success Record 2019 Showcased at the Annual ENETS Advisory Board

 

 

INCA Treasurer Mark McDonnell and INCA Executive Director Teodora Kolarova participated in the Annual ENETS Advisory Board on 14 November in Vienna to make sure the patient perspective is front and central to all discussions. A full day dedicated to issues of key significance for the development of NET expertise with a vision to provide optimal care to NET patients, advance meaningful practice-changing research on a global scale and ensure active patient involvement in setting research priorities. 

Teodora Kolarova reported on INCA achievements in 2019 under the organization’s three strategic pillars, highlighting the benchmark success of the awareness campaign around NET Cancer Day 2019, the Unmet Needs initiative with ENETS Best Poster Award in the Clinical Category, and the first open access publication of the full article capturing the survey results – in the highly-reputed International Journal of Cancer, as well as the expansion of INCA to 6 continents.
 

Photo: From left to right: Nicola Fazio (ENETS Advisory Board Chair), Simron Singh (CommNETS Co-Chair), Teodora Kolarova (INCA Executive Director), Mark McDonnell (INCA Treasurer), Dermot O’Toole (ENETS Chair)

NET Cancer Day Around the World

XVIII Patient Conference - The Future of Diagnostics and Treatments of NETs Hosted by A.I.Net la Speranza Italy on NET Cancer Day

 

The XVIII conference dedicated to neuroendocrine tumor patients and their families, hosted by A.I. NET Vivere la Speranza in Italy, was held this November 10th. The session was opened by INCA member organizations from Belgium and France addressing all attendees with special videos on the rationale behind the global NET Cancer Day initiative. The conference focused on all new diagnostic tools and recently developed therapies in the field of NETs. Panel discussions and Q&A sessions were chaired by leading Italian NET experts. The clinical trials being run both internationally and nationally were briefly reviewed, outlining potential opportunities and expectations.

Three NET Patient Info Days and a New Center of Excellence Mark NET Cancer Day in France

 

APTED France organized a series of meetings for patients and healthcare professionals in Toulouse, Dijon and Lyon. NET patients got the opportunity to share their experience and discuss in person all vital questions they have with NET experts from the region.

The University Institute of Cancer Toulouse-Rangueil Larrey (University Hospital of Toulouse) and the University Institute of Cancer Toulouse-Oncopole (Institut Claudius Regaud and University Hospital of Toulouse) received certification by the European Neuroendocrine Tumor Society (ENETS) as "European Center of Excellence in Neuroendocrine Tumors". The newly accredited structure now bears the name University Center of Excellence Neuroendocrine Tumors of Toulouse.

APTED warmly congratulates the Toulouse teams for obtaining the NET Center of Excellence accreditation. This is the 4th center in France with which APTED hopes to strengthen its collaboration for the benefit of all NET patients. 

CarciNOR Awarded Research Grants for NET Patient Data Registries on NET Cancer Day

CarciNor celebrated NET Cancer Day with an official inaugural award of research grants for experts from two leading hospitals in Norway. Haukeland University Hospital and Rikshospitalet, Oslo University Hospital each received a research grant from CarciNor, for the development of data registries for NET patients. In addition to the awards ceremony, lectures on PRRT (Lutetium) treatment were given as Norway approved the treatment only last autumn.

At the hospitals in Tromsø, Bodø and Oslo CarciNor members were giving away free coffees in branded «Let’s Talk About NETs» cups, handing out leaflets and talking to patients, doctors and nurses about neuroendocrine cancer. 

NET Cancer Day in Canada

 

CNETS Canada had another very successful NET Cancer Day in Canada. In 2019 all the landmarks across Canada helped raise awareness of NET cancer, by lighting up black and white (Zebra) on NET Cancer Day! To complement all the pictures posted on social media with the eminent buildings in Canada, the CNETs NET Cancer Day post engagement reached over 20,000 impressions!

NET ESPAÑA on NET Cancer Day

On the occasion of NET Cancer Day, on November 10th, NET-ESPAÑA organized two different sets of activities, one to increase awareness and visibility of the disease among healthcare professionals and the general audience, and a special educational event for NET patients and their families.

In an attempt to strive for diagnosing the disease at earlier stages, NET-ESPAÑA’s campaign used the slogan “change the color of NETs”. Two weeks prior to November 10th different information materials were distributed among healthcare professionals. Additionally, an online campaign with zebra masks was launched, which reached the oncology and endocrinology departments of all hospitals in Spain caring for NET patients.

The general audience was addressed by a video showing NET patients co-starring together with Fernando Llorente, a world-renowned soccer player, to raise awareness about the unmet needs NET patients face today. Watch the video with Fernando here. 

On November 5th, the IV Jornada NETs with patients was held at the MD Anderson Cancer Centre in Madrid. Under the motto "I count, YOU count, WE ALL count”, the NET patients and their families discussed the importance of working with multidisciplinary healthcare professional teams, always keeping the patient in the centre. The event drove active participation and stirred true interest and excitement. The giant zebra image at the entrance welcomed all participants, who were touched by a song written by one of NET ESPAÑA’s supporters. 

You can find more information in Spanish here   

NET Italy at ITANET, with Italian Celebrities Introducing PRRT on NET Cancer Day

On November 9th NET Italy Onlus took part in the ITANET Annual congress in Rome where a complete session was dedicated to associations and NET patients, with NET Italy President, Luisa Draghetti,  giving a presentation on NET Italy  achievements so far. The core topic of this annual event was the introduction of PRRT in Italy. As of March 2019, the usage of PRRT for GEP NETs was approved by the Italian government and many burning questions were discussed. PRRT was brilliantly introduced by  Italian NET experts and the famous TV journalist and NET patient, Mr. Andrea Pamparana. An open discussion followed involving more than 100 participants. 
On November 11th NET Italy organized a press conference followed by an expert panel led by Barbara Picutti, Board Member of NET Italy. The expert panel had NET patients’ needs at the center of the discussion.

NET Patient Foundation in a Session of Patient Information Days Around NET Cancer Day

NET Patient Foundation representatives and supporters took part in a session of events around NET Cancer Day throughout UK. NET Patient Foundation nurse, Nikie Jervis, was on hand to offer advice on how patients can manage their wellbeing on Patient Information Day at the Ann Edgar Charitable Trust. 

Almost 70 patients and supporters attended a patient education event at St. James’s University Hospital, Leeds that featured talks on gastrointestinal symptoms and the link to neuroendocrine tumors, the importance of nutrition while living with a NET/NEN and an excellent Q&A session with the experts, featuring:‬ ‪Dr. Alan Anthoney, Cathy Bouvier, Keeley Fairbrass, Steve Hartley, Amanda Proctor, Dr. Chris Williams, Elizabeth Wright, Tara Whyand. ‬‬‬‬‬‬‬‬‬

A presentation of the global NET community work, the NPF Ambassadors and some of the NPF’s key projects and campaigns was held by Catherine Bouvier, NPF CEO and INCA President-Elect at the Royal Free patient awareness and support meeting.

Stands to raise awareness about NETs were held by many volunteers and friends in various hospitals throughout UK. The Barnwell Charity Ball in aid of NET Patient Foundation was a huge success for which NET Patient Foundation would like to thank everyone for their support and help.

Annual NET Patient Day in Ireland
 


NET Patient Network held its annual NET Patient Day in Dublin on Saturday November 9th. The theme this year was "Living with NETs" and there were over 120 patients and family/friends in attendance. There were excellent talks on the NET Centre of Excellence in Dublin, lung NETs, mental and emotional health and diet and nutrition. The expert panel included Prof. Dermot O'Toole, Ms. Kym Winter, Dr. Gordana Kozlovacki, and other NET specialists from Ireland. The talks were followed by an active Q&A session and finished with a networking lunch, allowing everyone to mingle and to tell their stories. The day was enjoyed by all, with many new and old patients learning more about their disease and welcoming the opportunity to talk and listen to other patients. 
Slides of the presentations can be viewed from the following links:
Rachel Crowley, Gordana Kozlovacki, Kym Winter, Caroline Miller, Deirdre Burke and Donald O'Shea

Unicorn Foundation Australia on NET Cancer Day

The Unicorn Foundation was a proud contributor of NET Cancer Day.15,000 branded coffee sleeves were distributed to 26 cafes around Australia who served their coffee in the ‘Let’s Talk About NETs’ branded coffee cups and encouraged conversation amongst the community.
 
The Unicorn Foundation’s Simone Leyden featured on the National radio station, Smooth FM throughout their morning news reads at 6.30am and 7am, helping to raise awareness about NET Cancer Day and the often misdiagnosed symptoms of the disease to their 1.7 million listeners, twice!

Victory NET Foundation at the NET Patient Info Day in Switzerland

On November 6th a NET Awareness Day was held in Lausanne at the CHUV, the recently accredited Centre of Excellence for NET patients in Switzerland (for its French-speaking part). Victory NET Foundation shared its mission and achievements, and held a presentation followed by a lively discussion on what more could be done to build a stronger NET community in Switzerland. At the end of the session Victory NET sought the opinion of all 80 patients and relatives in attendance via a short survey in order to better understand patient needs and their willingness to take part in different initiatives. The results of the survey, designed with the invaluable assistance of the NET Patient Foundation UK, were very clear in identifying that NET patients from Lausanne need a face-to-face support group in the hospital with regular meetings. A support helpline and an online support community are what should be developed next. Equipped with this information, NET Cancer Awareness Day opened the floor for future collaborations between Victory NET Foundation and the CHUV. The first face-to-face support group is well underway with the assistance of the CHUV specialized NET nurse, Olivia.

NET Cancer Day 2019 in Belgium by VzW NET&MEN Kanker Belgium

 

VzW NET&MEN Kanker Belgium took the opportunity to introduce the book dedicated to those living with NETs,  entitled “Zebra Blos” (Blush the Zebra), at the Antwerp book fair, the largest book fair in Belgium, with more than 120 000 visitors, that was held this year on November 10th - NET Cancer Day.

“Blush the Zebra” is a warm and tender story about being sick. The author, Frank Geleyn, а professional Belgian writer and a NET patient himself, wrote the story to comfort fellow patients, give them strength, but also to raise awareness about neuroendocrine tumors, a rare and unknown disease. The zebra is the global symbol for NET patients. 

“Blush the Zebra” got some extra promotion by having a panel discussion about the book, open to the audience at the fair. Prof. Chris Verslype, one of the leading Belgian NET specialists and Eddy Deneckere, President of NET&MEN Kanker Belgium, were invited to talk about NETs.

With a small but enthusiastic team of patients and partners, VzW NET&MEN Kanker Belgium were talking to the visitors, handing out information leaflets and INCA NET Cancer Day pins. 

Medical  News

Five Travel Scholarships for Scientists to the 1st World NET Forum – Apply by December 2nd

The NET Research Foundation (NETRF) and ENETS are pleased to announce that up to five additional NETRF - sponsored travel grants will be made available to early-career scientists to attend the 1st World NET Forum – A Forum on Basic, Translational and Global NET Aspects on 10 and 11 March 2020 in Barcelona, Spain.
These travel scholarships are designed to provide early-career scientists (both clinicians and researchers) with the financial support to attend this first-of-its-kind, premier forum. 

NETRF will award up to $1,000 USD for each travel scholarship to scientists, who demonstrate excellence in basic and/or translational neuroendocrine cancer research. Travel scholarships will be awarded on the basis of scientific merit. Awardees will be notified about the travel scholarships once their abstract has been accepted for presentation. For more information on eligibility criteria and how to apply click here. 

First Results for Control NETs Study Funded by Unicorn Foundation to Be Presented at ASCO GI 2020

The first results of the Phase II study of 177Lu-Octreotate peptide receptor radionuclide therapy +/- capecitabine, temozolomide for midgut neuroendocrine tumours (mNETs) has been accepted as part of the Rapid Results section and as a poster at ASCO GI 2020 to be held in San Francisco in January. 
Poster Title: First results for Australasian Gastrointestinal Trials Group (AGITG) control net study: Phase II study of 177Lu-octreotate peptide receptor radionuclide therapy (LuTate PRRT) +/- capecitabine, temozolomide (CAPTEM) for midgut neuroendocrine tumors (mNETs).

One of the patients who took part in this trial, Sandra Woods, has thoughtfully taken the time to recount her experience which can be read here. 

Session Information:
Rapid Abstract Session B: Hepatobiliary Cancer, Neuroendocrine/Carcinoid, Pancreatic Cancer, and Small Bowel Cancer
Session Date & Time:
1/24/2020, 7:00 AM-7:45 AM

If you are attending ASCO GI 2020, please come along to the session to hear about this ground-breaking trial.

Do You Know About the COMPETE Phase III Clinical Trial?

COMPETE is led as an international, prospective, randomized, controlled, open-label, multicenter phase III study. This means, that during the study new data will be collected (prospective), that results in patients receiving the new treatment are compared to a control group receiving the standard therapy (controlled) and that patients are randomly allocated to receive either n.c.a. Lutetium-177-Edotreotide or the current standard of care (randomized). Additionally, patients and physicians know what drug is being administered (open-label) and the study is conducted at multiple sites in multiple countries simultaneously (multicenter).

The trial will evaluate the efficacy and safety of the targeted radiopharmaceutical n.c.a. Lutetium-177-Edotreotide (PRRT) compared with the standard therapy Everolimus in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). It is intended specifically for patients who have progressive NETs which have spread to other parts of the body (metastatic) or that cannot be removed with surgery.

Click here to read the patient friendly COMPETE booklet.

If you are interested in taking part in the study, please ask your attending clinician whether you comply with the inclusion criteria. There are 38 site locations around the globe, click here for more details.

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