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INCA Monthly Newsletter - October 2019 News Update
CONTENTS:
INCA News
INCA Members' News
Medical News
INCA News

NET Cancer Day is Just Around the Corner - Get Ready


There are only 10 days left until NET Cancer Day - Sunday, November 10th. Help INCA, the home of NET Cancer Day, spread the word further than ever before on November 10 by making #LetsTalkAboutNETs a global conversation - both online and throughout all communities. The focus of this year’s campaign is to highlight the challenges patients and clinicians face around ACCESS - access to information, access to treatment and care, access to support and access to research and funding. This year we are asking patients and clinicians to share their ACCESS stories across social media. You can print off one of our downloadable ACCESS posters and take a picture of yourself holding the poster or upload the poster directly onto social media along with your ACCESS story.

Share your ACCESS stories across social media.

Download the NET Cancer Day ribbon from our website and set as your profile picture from the 1st of November to help raise NET awareness.

Do you have your NET Cancer Day pin? Wear it proudly on Sunday, November 10th

If you are a NET patient group or an organization that would like to support this effort, you can see how in the World NET Cancer Day Toolkit. You can download it here.

INCA Poster on SCAN Presented at the NANETS Annual Symposium in Boston
 

Photo: from left to right - Michael Rosenberg, President and Founder of MENETs, Israel, Grace Goldstein, COO of Carcinoid Cancer Foundation, USA, Teodora Kolarova, INCA Executive Director, Ron Hollander, INCA Honorary Member
 
INCA took part in the North American Neuroendocrine Tumors Society Symposium, on October 3-5 in Boston with a poster presentation on SCAN. The Symposium featured a total of 113 abstracts.

The INCA poster on the Survey of Challenges in Access to Diagnostics and Treatments in NETs (SCAN) entertained great interest along with many questions on methodology and design. INCA is deeply grateful to NANETS and all the NET medical societies around the world for their instrumental support in promoting the global survey on access challenges.

A number of INCA members attended the 2019 NANETS conference – AMEND, Carcinoid Cancer Foundation, MENETS Israel, NET Research Foundation, Pheo Para Alliance. It made us really proud to see the INCA Novartis Global NET Patient Survey data from 2014 quoted extensively by several  speakers during the Symposium sessions. There is so little patient-generated data that our efforts to understand and address the unmet needs in the NET community do make a real difference.

INCA Poster on Unmet Needs in Access to NET Diagnostics and Treatment at 2019 ASCO Global Summit for Oncology Innovators in Bangkok
 

Photo: Yoshiyuki Majima, INCA Secretary and President of PanCAN Japan at ASCOBT21.

The inaugural ASCO Breakthrough Summit for Oncology Innovators - the first one of its kind in Asia was held on October 11-13 in Bangkok, Thailand. All attendees learned about the cutting edge in oncology and how rapidly-evolving science, technology and research are transforming cancer care with remarkable new treatments and therapies. INCA was among the few patient advocate organizations there, proudly represented by Yoshiyuki Majima, INCA Secretary. Majima gave a presentation on the access to diagnostics and treatments of neuroendocrine tumors and the differences between patient perceptions and reality. The poster on INCA Unmet Needs 2017 survey was part of the Summit poster walk and gave floor for information exchange, making more medical professionals aware of the challenges NET patients face today.

INCA at the NORD Rare Diseases and Orphan Products Breakthrough Summit
 

Photo: Ron Hollander, INCA Honorary Member and Past President at the INCA booth

INCA participated in the NORD Rare Diseases and Orphan Products Breakthrough Summit 2019 that took place on 21st and 22nd October in Washington, D.C., USA. Ron Hollander, INCA Honorary Member and  Past President was there to spread information about NETs and the ongoing INCA SCAN survey, engaging a wide range of rare disease advocates, hospitals, clinicians, researchers and communications/pharma organizations. INCA shared a booth space with the National Cancer Institute in the Advocacy Pavilion.

INCA Members' News

Help Raise Awareness of MEN2B - Vote for Ethan’s Film


A recently-produced awareness raising film about Multiple Endocrine Neoplasia Type 2B (MEN2B), starring young AMEND member, Ethan, has been nominated for a 2019 Charity Film Award. Ethan was diagnosed with MEN2B with metastatic medullary thyroid cancer at age 12.  Along with his family, inspiring Ethan’s wish is that no other child be diagnosed so late and go through what he has to.

Ethan starred in 2 of AMEND’s 4 films about MEN2B and it is the shorter film that has been nominated. The film very much gives Ethan a platform to share his experiences, thoughts and wishes. It is an emotional journey that firmly highlights the need for earlier diagnosis in MEN2B. The best time to achieve a cure is when children are diagnosed and treated in the first year of life. Sadly, the average age of diagnosis is 13 years.

Help AMEND to grant Ethan’s wish of raising awareness of MEN2B and lowering the average age of diagnosis by voting for his film in this year’s UK Charity Film Awards. Voting is open from Friday 25th October, through to 1st December. Charity Film Awards require a few contact details from you to ensure that duplicate voting doesn’t occur; however, they do not use these details to contact you.

Click here to vote for Ethan’s film.

APTED Organizes Info Days Throughout France to Mark NET Cancer Day

APTED France will organize meetings for patients and healthcare professionals at three different locations throughout France to mark NET Cancer Day in November. On November 8th a meeting will take place in Toulouse, the newest French NET Center of Excellence, IUCT, will welcome NET patients to a half-day training and sharing of knowledge on best therapies available for NET patients in France. On November 16th there will be an information day in Dijon, while on November 23rd, NET patients from Lyon would have the opportunity to discuss all vital questions they have in person with NET experts from the region.

Attendance is free of charge, upon registration. For more information, visit APTED’s website.

Lung Neuroendocrine Tumors and DIPNECH - The CCF's Featured Facebook Live New Topic in October


NET specialist Dr. Robert Ramirez, medical oncologist at Ochsner in Louisiana, was recently CCF’s featured FACEBOOK LIVE guest, speaking about Lung Neuroendocrine Tumors and DIPNECH. He has clinical and research interests in lung cancer, specifically non-small cell and small cell cancers as well as neuroendocrine tumors of the lung including DIPNECH, typical and atypical carcinoids. He is a recognized thought leader in these fields. Watch the video here.

CHUV Switzerland Invites NET Patients to Share Knowledge on November 6th


How to improve the quality of patients’ everyday life while living with NETs? This is the topic of this year’s event organized by the Centre for Neuroendocrine Tumors (CHUV) Switzerland on the occasion of NET Cancer Day. CHUV, an ENETS Center of Excellence based in Lausanne, Switzerland, invites the community to join a knowledge sharing space from 17:30 to 19:00 on November 6th.

In order to respond to the many questions related to NET diets and nutrition, a dietitian specialized in oncology and neuroendocrine tumors from the Royal Free Hospital in London will give a comprehensive presentation on the topic.

Victory NET Foundation will present the services it provides to all NET patients from Switzerland in terms of support and guidance.

Each participant will also receive a small gift pack from INCA.

Download the event’s program here

Landmarks Across Canada Will Light Up Black & White on World NET Cancer Day

Photo: The Toronto CN Tower will light up in black and white on November 10th to mark World NET Cancer Day

CNETS Canada thanks all the landmarks across Canada that will help raise awareness of NET Cancer, by lighting up black and white (Zebra) on November 10th, the World NET Cancer Day. CNETS Canada invites all supporters if near one of these landmarks to join in by taking pictures and posting on social media using: #LetsTalkAboutNETs @cnetscanada

Eight landmarks will recognize World NET Cancer Day in Canada.
•    City Hall – Vancouver, British Columbia
•    City Hall – Lethbridge, Alberta
•    City Hall Towers – Toronto, Ontario
•    Reconciliation Bridge – Edmonton, Alberta
•    Calgary Tower – Calgary, Alberta
•    Niagara Falls Illumination Board – Niagara Falls, Ontario
•    CN Tower – Toronto, Ontario
•    Tower of Olympic Stadium (Parc Olympique) – Montreal, Quebec

First 3 NET Patients from Italy Trained to Help Healthcare Professionals Better Understand What It Is To Live with NETs

Photo: Maria Luisa Draghetti, Simona Barbi and Alessandra Laudati from NET Italy Onlus amidst UNIMORE patients group at the course graduation

Three NET patients from NET Italy Onlus - Maria Luisa Draghetti, Simona Barbi and Alessandra Laudati, just got their diplomas as students of UNIMORE (University of Modena and Reggio Emilia) completing the course “Didactic Methodologies for the Teaching of Medicine Supported by Informed Patients”. The diplomas would grant these expert NET patients the opportunity to assist professors of medicine in their teaching process with students of various healthcare professional fields.

The NET patients who have successfully passed the course developed skills on how to share their experience in front of an audience of healthcare students: how to speak about the feeling at the time of receiving diagnosis, what it’s like to communicate with doctors and nurses about your condition, and how to handle therapy. This new teaching methodology is an approach meant to equip the healthcare professionals with better understanding of the complex disease by including the patients’ perspective in the teaching process. Being put to practice for the first time in Italy, this methodology is developed by the Association EduCare (Modena) in cooperation with the University of Modena and Reggio Emilia and is based on the experience provided by the Montreal University (UDEM) in Canada. This would enable the NET patient voice to be heard in the halls of universities in Italy, starting from Modena.

Interested in the program? Get more information from NET Italy Onlus.

NETRF Introduces Patient Guide to Neuroendocrine Cancer Treatment and Wellness Care Plan Launch

On World NET Cancer Awareness Day, November 10, 2019, the Neuroendocrine Tumor Research Foundation (NETRF) will launch a new educational resource for patients, family members, and caregivers - a 64-page guide to neuroendocrine cancer. The guide, Neuroendocrine Cancer: A Guide for Patients and Family Members, is a hands-on reference for the tests, treatments, and management of gastrointestinal, pancreatic, lung, and adrenal neuroendocrine tumors. It offers a solid overview of NETs for the newly diagnosed patient, serves as a helpful reference for longer-term survivors, and gives practical tips on nutrition, diarrhea, and patient/provider communication for those at any stage of the disease.

"Global NET patient surveys organized by INCA consistently show patients and families need greater access to reliable information and NETRF addresses that need," said Elyse Gellerman, NETRF Chief Executive Officer. "This guide is another NETRF tool to educate and empower those facing neuroendocrine cancer."

Request your copy today.

Pheo Para Experts Host Webinar About Biochemical Testing for Diagnosis of Pheochromocytoma

On November 14 at 9am PT/Noon ET, the Pheo Para Alliance will host a live webinar with Jacques Lenders, MD PhD FRCP and Professor Graeme Eisenhofer, PhD who will discuss biochemical testing for pheo para diagnosis. These two world-renowned pheo para experts will explain catecholamines and metanephrines, the testing process, how to prepare for testing, dietary restrictions and interpretation of results. Patients and their families will also have an opportunity to ask questions.

Register here.

This Year Marks the 10th Anniversary of the Unicorn Foundation

Photo: from right to left Kate Wakelin, Simone Leyden, Meredith Cummins and Linda Ryding, the Unicorn Foundation

This major milestone for the foundation was commemorated with a gala dinner on the 12th of October in Melbourne, Australia with 250 of their major supporters.
 
The night was dedicated to honoring the people from the foundation’s past and present who have helped to make the Unicorn Foundation the organization that it is today. A massive $80,000 was raised on the night for people living with NETs and all profits raised have gone back into NET research and patient support.

The evening also included the premiere of their 10-year anniversary video. A 12 minute video that takes the viewer on a journey through all of the Unicorn Foundations most memorable achievements over the last decade.

INCA congratulates the Unicorn Foundation for 10 years of exemplary work!
You can watch the video here

Medical  News

Live Q&A With the 2019 Nobel Laureate
William G. Kaelin, Jr., MD



The latest Nobel Prize in medicine involved the study of a Neuroendocrine Tumor and familial condition Von Hippel Lindau. Joint winners William G. Kaelin Jr., Sir Peter J. Ratcliffe and Gregg L. Semenza, won for their discoveries of how cells sense and adapt to oxygen availability. The Nobel Laureates established the basis for our understanding of how oxygen levels affect cellular metabolism and physiological function. Their discoveries have also paved the way for promising new strategies to fight anemia, cancer and many other disease. The hope is now for drug development in this area of rare cancer. 

Read the full article here.
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