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INCA Monthly Newsletter - August 2019 News Update
INCA Members' News
Member in Focus
Medical News

INCA Launches SCAN on September 16th

In harmony with one of its 3 key strategic pillars, INCA has developed a new online survey, aiming to shine a light on the challenges NET patients around the globe face in terms of access to diagnostics and treatment. Following the pilot phase of improvements and enrichment of the survey content, with the invaluable volunteer help provided by medical experts and NET patients from different continents, INCA is ready to launch the survey on September 16th. The survey will be available for all participants in 14 languages: Arabic, Bulgarian, Chinese, Dutch/Flemish, French, English, German, Hindi, Japanese, Italian, Portuguese, Russian, Spanish, and Swahili.

SCAN is an acronym standing for Survey of Challenges in Access to Diagnostics and Treatment for NET Patients. INCA, together with its 26 member organizations across 6 continents invites NET patients and healthcare professionals to SCAN the challenges in NET diagnostics, treatment and care. This is going to be the biggest effort released up until now in the NET patient community to globally assess the healthcare systems in terms of provision of care to NET patients.

This is not just another survey. For the first time, SCAN is going to measure the out-of-pocket costs of diagnosis, treatment and on-going monitoring of NETs on a global scale. SCAN aims to collect robust data reflective of the NET patients’ experience by geographical areas covering Africa, Asia, Oceania, North and South America. With the ambitious goal of collecting responses from all parts of the world, both from NET patients and healthcare professionals, we rely on you to spread the word about SCAN.

INCA would like to especially thank the Access Committee team for its tireless work in this major project, as well as all the NET patients and healthcare professionals who have devoted their time to help us make this survey real – Beth Leonard, Eddy Deneckere, Jorge Romero Day, Piotr Gorski, Roger Naidoo, Dr. Patrice Rodien, Prof. Dermot O’Toole, and Dr. Ivan Tonev!

Stay tuned on INCA social media channels for updates about SCAN. Coming soon!    
For more information about SCAN click HERE


INCA Summit 2019 Video Series Published

The full video series covering the INCA Summit 2019 held in Plovdiv, Bulgaria, is now available on INCA’s YouTube channel. The playlist INCA Global NET Patient Advocate Summit 2019 contains 12 presentations ordered in the sequence of their appearance at the Summit. The presentations cover the three major areas in need of improvement – awareness of NETs, access to optimal treatment and care and NET research.

Showcases with best practices coming from all INCA member patient organizations can be viewed in the separate playlist - Members Showcase. The 17 short videos of up to 4 minutes each describe what has been achieved in different parts of the world in terms of raising awareness about NETs.

For more NETs related videos subscribe to INCA’s YouTube channel.

INCA Members' News

The Precedent Trial for GEP-NETs in India Is Recruiting

Important news coming from CNETS India about an upcoming single centre prospective trial on Lu 177 PRRT vs Lu 177 PRRT with CapTem chemotherapy in GEP-NETs.  Key inclusion criteria for the trial are:
•    Well-differentiated GEP-NETs (gastro-entero-pancreatic neuroendocrine tumors)
•    All G1 and G2 (Ki-67 of 3-5%) with progressive disease in 6 months
•    All G2 and G3 tumors
•    Positive Ga-DOTA PET/CT and FDG PET/CT
For more information turn to your medical professional or to the Department of Nuclear Medicine at Tata Memorial Hospital, Mumbai, India.

Playa d'en Fossa: A Combination of Entertainment and Charity

Playa d’en Fossa is a project born in 2008, conceived by a group of friends sharing both passion for music and the wish to spend time together without forgetting those who unfortunately cannot enjoy their lives to the fullest. This group of young people, living in a small village named Fossa (Concordia) in the Northern Modena area, organize an annual event, to celebrate the end of the summer season. What makes Playa d’en Fossa different from any other party is its final target: the work done by volunteers, the good music, food and drinks are all aimed towards collecting funds for selected purposes. The organizers were able to transfer their spirit to participants and the combination of entertainment and charity has become a key success factor over the years.

The eleventh edition of Playa d’en Fossa took place on Saturday, August 24th, 2019. "Playa d’en Fossa power flower" is the theme chosen for the 11th anniversary of the event. On stage, DJ sets alternated with some of the best vocalists at the moment.

As in the past years, proceeds will be donated to local non-profit associations, schools, and for the first time - to support national and international projects. NET Italy Onlus were very proud to be one of the selected associations, taking the opportunity to not only collect funds to be invested in their next project, but also to spread information about NETs among the younger generations.

NPF Ambassadors: Bridging the Patient Voice Into Everything NPF Does

The NET Patient Foundation had its inaugural meeting on the 29th August which was engaging, full of energy and new ideas. The team at the NPF felt reinvigorated and inspired by the drive and commitment each person bought to the table! The NPF Ambassadors will be taking on specific roles from financial advice to the planning of NPF workshops on 'living with’, through to working on the new media programme that is in progress, and will be part of NPF's new website to be launched this year.

The NET Research Foundation Launches Neuroendocrine Tumor Podcast 

The NETRF is pleased to introduce the NETWise Podcast. More intimate and portable than a series of videos and more in-depth and narratively engaging than brochures or booklets, podcasts can present information directly from the voices of leading experts in a way that is compelling, accessible, and portable, can be shared easily, widely, and for free, and can be listened to privately in just about any situation: at home, in the car, on public transportation, in bed, in a living room, or in a waiting room.

Covering all the basics and the intricacies of NETs, NETRF interviewed more than twenty NET experts and patients from around the world to bring you their NETWise Podcast.
Listen to the first episode here

Pheo Para Alliance Launches Facebook Live Webinar Series

The Pheo Para Alliance invites everyone interested to join for the first episode of Facebook Live Webinar series where patients and their families will have an opportunity to tune in and ask a pheo para expert questions via Facebook Live.

The inaugural event will feature Karel Pacak, MD, PhD, DSc from the NIH. Dr. Pacak is Chief of Section on Medical Neuroendocrinology, NICHD, which is one of the largest centers in the world to diagnose and treat patients with pheo para. This episode will be moderated by Pat Collins, Reporter, for NBC4 Washington.

Join in Thursday, September 5th, 4:30 pm PT/7:30 pm ET on the Pheo Para FB page

Unicorn Foundation Brisbane NET Patient Forum

On August 27th, the Unicorn Foundation Australia hosted a free forum for people affected by neuroendocrine tumors, friends and families as well as interested healthcare professionals. The forum gathered together more than 80 NET patients. Attendees were able to join guest experts in discovering the latest developments in the management of NETs with the focus on "NETs - Multidisciplinary Care". Plenty of time was set aside for discussions and attendees had the opportunity to submit any questions or topics prior to the event.

Invited guest experts included:
A/Prof. David Wyld - Medical Oncologist
A/Prof. David Pattison - Nuclear Medicine Specialist/Endocrinologist
Prof. Jane Turner – Psychiatrist
Dr. Amanda Love – Endocrinologist
Kate Wakelin - Unicorn Foundation NET Nurse

For more information about the venue, check here

Blush the Zebra - NET Patient Dedicates a Story to All NET Patients

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.

The plot follows Blush the zebra trying to keep up with the herd. Being sick and constantly tired, Blush is afraid of falling behind. When finally left behind, unexpected support arrives. This is an inspiring book about the power of the weaker and the comfort in the herd.

vzw NET & MEN Kanker Belgium is going to fully support the book. “Blush the Zebra“ will be officially presented at the Belgian book fair in Antwerp, with a panel discussion, exactly on World NET Cancer Day - Sunday, November 10th, 2019. The book fair in Antwerp is the largest in Belgium, with about 150 000 visitors each year.
Member in Focus

The Victory NET Foundation in Focus

Victory NET came about purely by chance, when a random group of people were brought together by loss and sadness and yet, in their pain and suffering, gave rise to new hope. The bond they forged and the dynamic it generates has made it possible to envisage a better world for people living with neuroendocrine cancer.
It all started with a Swede named Jan Smörlung, who became the first patient in history to receive cancer treatment funded by 2,000 people in 40 countries and a very generous Geneva-based patron. Jan was hospitalised with liver NETs at the Uppsala University Hospital (Sweden), where he became the first recipient of a new experimental NET treatment called AdVince.

AdVince is a potential treatment for a form of neuroendocrine cancer currently being tested at Sweden’s Uppsala University. AdVince gets its name from the ‘adenovirus’ (a harmless virus causing the common cold), modified by a team of Swedish scientists to develop their therapy, and Vince Hamilton, our founder who helped finance the trials. The treatment consists of inoculating patients with a virus specifically designed to infect and kill only NET cancer cells in the liver. It also stimulates the immune system to attack cells infected with this virus. Currently, the first results of the clinical trial are encouraging, but it is still too early to draw meaningful conclusions.

Professor Magnus Essand and Dr. Justyna Leja-Jarblad at Uppsala University have been developing AdVince since 2008. First tested on mice, it proved effective in destroying neuroendocrine tumors. Phase 1 of the clinical trial (liver NET) began in 2016 and is still ongoing as more patients are needed for its completion. Victory NET is hopeful that there will be interesting news in the fall about the development of the trial.
Apart from being fully involved in research to discover new drugs and treatments for all forms of neuroendocrine cancer, essentially by funding clinical trials, Victory NET also focuses on education and patient support. In early November, the Victory NET Foundation will participate in the Symposium organized by the CHUV in Lausanne, which has been accredited as Centre of Excellence in Switzerland. The foundation team  will take this opportunity to introduce themselves to the patients and medical staff and discuss their needs and expectations.

Striving to learn more and spread knowledge for the betterment of NET patients, in July James and Fabienne from the Victory NET Foundation attended the very informative and well organized WECAN Academy for Cancer Patient Advocates.

The foundation is dedicated to NET patients and their families and friends and has adopted the motto of its home city, Geneva: Post tenebras lux – light after darkness.

Victory NET Foundation is proud to have joined INCA and benefit from its knowledge, audience and leadership. 
Medical  News

The Rationale for Liver-Directed Therapies in Metastatic NETs

Management of neuroendocrine liver metastases relies on many treatment modalities, ranging from surgery to ablation. Clinicians have in their armamentarium interventional radiology techniques that use regional and systemic treatments spanning a diverse group of biologic, cytotoxic, and targeted agents.

Targeted Oncology recently published the explorations of Juan C. Camacho, MD on the rationale for using liver-directed therapies and peptide receptor radionuclide therapy (PRRT) in patients with neuroendocrine tumors (NETs) that have metastasized. The dominant factor affecting the overall prognosis in patients with NETs remains the presence of liver metastases, said Camacho, assistant attending radiologist in the Department of Radiology of Memorial Sloan Kettering Cancer Center in New York City, during the presentation.

Read the full article here.

Detection of NRG1 Gene Fusions in Solid Tumors

Detection of NRG1 gene fusions in neuroendocrine tumors and other solid tumors was  the subject of a recent publication in Clinical Cancer Research. The interest in evaluating the prevalence of NRG1 fusions has increased given the potential therapeutic implications of this genetic alteration. Because the original description of the CD74–NRG1 gene fusion in invasive mucinous lung adenocarcinoma, detection has been noted in other tumor types, both de novo and as a resistance mechanism in ALK-rearranged NSCLC. The article reports the incidence and characteristics of NRG1 fusions across a variety of tumor types based on a large molecular profiling experience. Out of 21,858 tumor specimens profiled from September 2015 to December 2018, 41 cases (0.2%) harbored an NRG1 fusion. Multiple fusion partners were identified. Fusion events were seen across tumor types. The greatest incidence was in non–small cell lung cancer (NSCLC, 25), though this represented only 0.3% of NSCLC cases tested. Other tumor types harboring an NRG1 fusion included gallbladder cancer, renal cell carcinoma, bladder cancer, ovarian cancer, pancreatic cancer, breast cancer, neuroendocrine tumor, sarcoma, and colorectal cancer.

Read the full publication here.
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