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INCA Monthly Newsletter - October 2018 News Update
INCA Members' News
Medical News

World NET Cancer Day and Global Unmet Needs Research

Dear Friends of INCA,

What a busy year it has been, and as we approach World NET Cancer Day November 10, only 2 weeks away, we have so many stories to tell. Raising awareness about NETs is a core pillar of INCA and we are excited to launch our infographics (on awareness, access to treatment, research, timely information) in 8 languages, English, Chinese (Mandarin), German, French, Japanese, Italian, Russian and Spanish.

To be the global voice for all NET Cancer patients, resources like these are vital, so please click here, here and here to view and share. 
We have developed a tool to help you raise awareness this year with our World NET Cancer Day Toolkit. Inside you will find all the information you need on key messages, social media, and what you can do to spread the word. Make sure you send us pics of how you will be helping to raise awareness about NET Cancer and we can upload to our social media and our new look website to be launched just before November 10. We will continue to build our website so that it is a resource for all to use. Together we can make a real difference as we strive for earlier diagnosis, improved access and research this World NET Cancer Day. #letstalkaboutnets

As well as distributing branded NET cups, building our new website, toolkit, infographics we have been busy engaging with the medical community with our Global Unmet Needs survey from 2017.
We are so pleased to report that last week at the European Society of Medical Oncology (ESMO) in Munich, INCA won “Best Poster” for the survey results we presented - the poster, titled: “Unmet needs in the management of neuroendocrine tumours: A global survey involving patients, patient advocates and healthcare professionals”. This is a noteworthy achievement, as it raises the issues of what NET Cancer patients face with an audience that can really make a difference - over 35,000 medical specialists attended the meeting. We have also presented a poster on unmet needs in early October at the North American Neuroendocrine Tumour Society (NANETs) Symposium in Seattle, and will be presenting as part of the scientific program next week at the Asia Pacific Neuroendocrine Tumour Society (APNETs) in Melbourne. We thank everyone who contributed to this important research and work and for the grant we received by our INCA friend and member the NET Research Foundation.

Raising awareness with the public and medical community is a key goal for INCA and its members around the world, so we wish you the best for this World NET Cancer Day and know that we are working together and with you.
Kind regards,           

Simone Leyden                                                     
INCA President
CEO The Unicorn Foundation

INCA Poster on Unmet Needs in NETs Wins Best Poster Award at ESMO 2018


(from left to right) Nicola Fazio, Chair of the Scientific Poster Committee, Catherine Bouvier, CEO of NET Patient Foundation UK and INCA Board Member, Teodora Kolarova, INCA Executive Director, and Alfredo Berruti, Brescia, Italy

INCA poster ‘Unmet needs in the management of neuroendocrine tumours (NETs): A global survey of patients, patient advocates and healthcare professionals’, won the Best Poster Award at the European Society for Medical Oncology 2018 Congress. Held under the tagline “Securing access to optimal cancer care”, the ESMO 2018 Congress took place between 19 and 23 October in Munich, Germany. It has offered a multi-professional platform for oncology education and exchange, and massive international visibility for scientific research, while involving all key oncology stakeholders: researchers, clinicians, cancer nurses, industry partners, patient advocates and media in discussions on securing better patient outcomes through access to high-quality care.
INCA would like to once again thank everyone who supported the unmet needs initiative, which has now resulted in a number of significant presentations and publications.

INCA Presents its Unmet Needs Initiative in 7 Languages and Across Key Medical Conferences



INCA White Paper on Unmet Needs in the Global Patient Community and the full set of infographics and motion graphics illustrating its results are now available in 7 languages: Chinese (Mandarin), German, French, Japanese, Italian, Russian and Spanish.

In 2017, INCA inspired and lead the effort to assess unmet needs in the Neuroendocrine Tumour (NET) community globally. These needs were identified via an online survey among NET patients and their caregivers, patient advocate leaders, and healthcare professionals in 26 countries. In-depth interviews with ten clinical leaders and nine patient advocate leaders from around the globe further enriched the survey results.The assessment conducted by INCA identified significant unmet needs: in the provision of information to patients, and in access to the latest diagnostics, essential services and multidisciplinary care. A lack of patient involvement in research strategies and clinical trials also transpired.

This assessment was supported through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member, and the translations of all unmet needs materials were funded through the NETRF grant, as well as grants from Novartis, Ipsen and Pfizer.

Two abstracts on unmet needs in the global NETs patient community based on the INCA survey have been presented at the recent 2018 North American Neuroendocrine Tumour Society (NANETs) Annual Multidisciplinary NET Disease Symposium, October 4-6, in Seattle, Washington, and at the ESMO 2018 Congress, 19-23 October, in Munich (Best Poster Award). An oral presentation 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" will be part of the program of the Asia Pacific Neuroendocrine Tumour Society (APNETs) 2018 Conference, November 9-11, Melbourne, Australia.
Simone Leyden, INCA President shared: "INCA is committed to being the global voice of NET patients, and we are excited to be able to relate the key messages around unmet needs in so many languages and at the key medical forums. This effort will open the door to new territories and communities around the globe, with whom we are looking forward to greater collaboration and collective action to address the many challenges NET patients face, in securing a timely diagnosis and accessing optimal treatment and care."

INCA Poster “Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals”at NANETS


The 2018 North American Neuroendocrine Tumour Society (NANETs) Annual Multidisciplinary NET Disease Symposium, October 4-6, in Seattle, Washington, was notably underlined by the drive of collaboration across the globe. Ron Hollander, INCA Immediate Past President and Teodora Kolarova, INCA Executive Director had the pleasure of presenting the INCA poster “Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals” at a very intense and engaging forum. With a total of 110 poster presentations from 11 countries featured on the electronic poster boards, the INCA poster entertained significant interest by healthcare professionals, researchers, medical students, patient advocates and the pharmaceutical industry. 
Apart from a very insightful scientific experience, the 2018 NANETS Symposium offered INCA the valuable opportunity to connect with NET leaders and potential collaborators, and catch up with some of the INCA members in attendance – representatives of Carcinoid Cancer Foundation, NET ResearchFoundation, PheoPara Alliance, and AMEND.
INCA Members' News

AMEND Makes Sure the Patient Voice Is Heard

There is currently a great deal of patient representation activity in the area of neuroendocrine tumour syndromes and endocrine tumours for AMEND. AMEND is participating in developing a UK Consensus Statement on the use of tyrosine kinase inhibitors (TKIs) in refractory differentiated and medullary thyroid cancers. In addition, AMEND participated in the preliminary meeting of patient groups, clinicians and researchers looking to develop a national strategy for research into rare paediatric endocrine conditions. The latter is in line with the work of the European Reference Networks (ENDO-ERN and EURACAN) in which AMEND is also heavily involved. For ENDO ERN, work is already underway to undertake the ERN’s accepted research project looking at genetic testing issues in multiple endocrine neoplasia (MEN) type 1, and in association with the European MEN Alliance (EMENA), AMEND will be helping to develop a Europe-wide survey on Quality of Health in patients with MEN, to be distributed in early 2019. The last piece of work from EMENA, a Europe-wide survey on Quality of Care in MEN has already resulted in two poster presentations due to take place at the upcoming British Endocrine Society (BES) meeting.

How to Stay Positive with Neuroendocrine Cancer


"How to Stay Positive with Neuroendocrine Cancer" is the latest video in Carcinoid Cancer Foundation’s 50th anniversary series. Beth asked the doctor to remove her appendix while having surgery on her gallbladder. She had a feeling something bigger was going on... she was right.

Watch the video on CCF's Youtube channel or Facebook page.

Team Zebra Toronto Raises $60,000 for NET Cancer Research


Congratulations to the amazing  Team Zebra Toronto  for raising just under $60,000 for NET cancer research in Canada, at the 2018 Scotiabank Toronto Waterfront Marathon.

The cold weather didn’t stop Team Zebra members who participated in the 5K (running and walking) and the half marathon. All of the Team Zebra participants in the various distance events were sporting zebra gear and raising awareness of NETs while celebrating the phenomenal fundraising effort.

CNETS Canada is incredibly proud of the entire team and couldn’t have achieved this amazing milestone without the contribution of every single team member! 100% of the funds raised will go towards NET cancer research in Canada. Thank you and congratulations to Team Zebra Toronto!

NET Patients and Supporters Will Raise Awareness at Medical School Across the UK


As part of the NET Patient Foundation NET Cancer Day activities, NET patients and their supporters will be taking their stories and experience to medical schools across the UK. Armed with relevant literature and giveaways, they are ready to raise awareness of NETs to student doctors - our Neuroendocrine doctors of the future! Thank you to  the NET Patient Foundation’s amazing team of volunteers for all that they do.

NET Research Foundation: Targeting Single Cancer Cells with PRRT to Prevent Metastasis


Despite the effectiveness of Peptide Receptor Radionuclide Therapy (PRRT) to prolong survival of those with neuroendocrine tumors (NETs), many patients will see their cancer spread a few years later.

To help discover technology capable of more accurately killing individual neuroendocrine cancer cells, NETRF granted a 2018 Petersen Investigator award to Roger Schibli, PhD, Paul Scherrer Institut, Zurich Switzerland. His study will explore the safety of a novel radionuclide for PRRT to reduce risks of recurrence. Schibli will study terbium radionuclides (Tb-161), which have distinct radioactive properties, compared to existing radionuclides, such as lutetium 177 dotatate (Lu-177) or Yttrium-90 (Y-90). According to Schibli, Tb-161’s properties may help to kill single cancer cells, which may be left lingering on the margins of a tumor and then continue to grow, leading to recurrence or metastases.

Testing Tb-161 for neuroendocrine tumors
Tb-161 kills tumor cells at short and long ranges. Schibli’s study evaluates the ability of Tb-161 dotatoc to kill single cancer cells and tiny metastases in a pre-clinical setting before they proceed with the first-in-man study. Schibli’s proof-of-concept clinical testing of Tb-161 is planned to be done in collaboration with Richard Baum, MD, PhD, in Bad Berka, Germany.

Watch this video to learn more.

Unicorn Foundation Leads NETs Awareness Efforts in Australia

Unicorn Foundation HQ has been busy this month with counting, packing and sending out World NET Cancer Day cup packs to over 50 cafes, hospitals, sporting clubs and other venues all around Australia. A huge thanks to everyone who has helped with this campaign! Don't forget the toolkit full of information which includes the best key messages to use on social media to raise awareness about NETs. Wishing everyone a very successful NET Cancer Day 2018.

November is going to be a huge month with both the APNETS Conference and the NET Patient Symposium also being held in Melbourne. The Unicorn Foundation is excited to be catching up with its community at the Symposium and looks forward to meeting many new friends as well. 

Medical  News

New NCCN Guidelines for Patients Focused on Navigating Neuroendocrine Tumors

The National Comprehensive Cancer Network® (NCCN®) has published a brand new NCCN Guidelines for Patients focused on neuroendocrine tumors (NET).  These new guidelines offer up-to-date information to help patients and caregivers make knowledgeable medical decisions. The content has also been endorsed by The Carcinoid Cancer Foundation, Inc. and the Neuroendocrine Tumor Research Foundation (NETRF).

“When people with neuroendocrine tumors seek information on what to expect, they often find a lot of confusing advice online,” explained Whitney S. Goldner, MD, Fred & Pamela Buffett Cancer Center, Vice-Chair of the NCCN Guidelines Panel for Neuroendocrine and Adrenal Tumors. “They might even know someone with a NET, but in a different location, leading them to expect symptoms and treatment courses that won’t apply to their circumstances.”

The most common types of NETs are found in the lung, airways, small intestine, rectum, appendix, and thymus. Another common type is found in the pancreas. In some locations, NETs can cause hormones to be released into the blood system.

“It really takes a multidisciplinary team to treat these tumors,” Dr. Goldner continued. “Everybody plays a different role in the care of NETs, including endocrinologists, medical oncologists, surgical oncologists, radiation oncologists and sometimes nuclear medicine radiologists. These guidelines help prepare patients for the group of people who will comprise their treatment team, and ensure they understand the need for specific testing and therapies for their tumor.”

While neuroendocrine tumors often occur in patients without any risk factors, there are some that result from hereditary, genetic syndromes. Awareness of NETs has increased over the past decade, helping doctors to correctly diagnose it more quickly. Advances in imaging have also led to more targeted therapies.

Full article

NCCN Guidelines for Patients: Neuroendocrine Tumors

Health Canada Approves Telotristat Ethylfor the Treatment of Adult Patients Suffering From Refractory Carcinoid Syndrome Diarrhea

Telotristat ethylis a novel, orally administered, inhibitor of the enzyme tryptophan hydroxylase and is designed to reduce the production of serotonin. The approval was based on the positive results of the TELESTAR pivotal trial and the TELECAST trial, two phase 3, randomized, placebo-controlled, 12-week trials where the efficacy and the safety of telotristat ethyl were demonstrated in carcinoid syndrome patients. Both trials reported statistically significant reductions of bowel movement (BM) frequency compared with placebo and change in u5-HIAA from baseline.

Full article

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