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INCA Monthly Newsletter - March 2018 News Update

 The Second INCA/ENETS Symposium - a Collaborative Effort by NET Patient and Medical Leaders to Address Unmet Needs in NETs

Over 150 conference participants, including some of the thought-leaders in the NET medical community attended the Second INCA/ENETS Symposium on March 9, 2018. The significant increase in the number of people interested in the topics discussed compared to last year, clearly indicated the growing appreciation of the role patients can play. The focus was on unmet needs in the "Patient Pathway" - the patient information gap, ways to improve the information delivered to patients throughout the treatment journey, as well as access to appropriate care. Another key topic was engaging patients in research from trial design to clinical trials.
A message so clearly put by Dr. Ben Lawrence from New Zealand ‘….we would not design a treatment plan without consulting the patient, thus we should not design research without involving the patient ...’ resonated very strongly with the audience.
INCA and ENETS leaders have pledged to form task forces to identify concrete steps that can be taken to address the issues that impede optimal care and research, and to invite the other NET medical societies (NANETS, COMMNETS, APNETS) to join INCA. 
INCA is very grateful to ENETS who for the second year supported the INCA/ENETS join patient symposium as part of the main scientific program.
Speakers and panelists included: Prof. Martyn Caplin (Royal Free Hospital UK), Simone Leyden (INCA President), Ron Hollander (INCA Immediate Past President), Dirk Van Genechten (INCA Board Member), Teodora Kolarova (INCA Executive Director), Kate Wakelin (NET Nurse Unicorn Foundation Australia), Lisa Plum Munk (NET Nurse, Denmark), Dr. Ben Lawrence (oncologist and NET researcher, New Zealand), Josh Mailman (USA).
The patient advocates and INCA members in attendance also participated in a networking luncheon after the Symposium where posters on NET Cancer Day 2017 were on display.
For the full program please click here.

INCA Members' News
Medical News
World of NETs

INCA Members Summit - an Inspirational and Constructive Meeting


The Annual INCA General Membership Meeting and Members Summit gathered 16 member organizations from 14 countries around the globe in Barcelona on March 5-6, just two days before the start of the 15th ENETS Conference. In addition to a review of NET Cancer Day 2017 and the Unmet Needs initiative, as well as draft plans for 2018, a significant review of the INCA strategic plan was carried out by way of a facilitated discussion and breakout group work leading to consensus on potential 2018-2022 objectives.
In the afternoon of the 6th the INCA Summit participants welcomed the ENETS Chair (Dr. Dermot O'Toole, Ireland) and Dr. Ben Lawrence (NET specialist/researcher from New Zealand and COMMNETS member) to discuss next steps in the collaboration with NET medical societies. It was indeed inspirational to sense the enthusiasm and commitment on the part of the medical profession to our joint partnership to address unmet needs.
Initial action plans to meet patients' information needs and engage patients in the design and support of research will be developed by two task forces.
The excitement sparked by the feeling of bonding and the recognition of the power we have as a community was palpable during the meeting.

ESO Masterclass in Cancer Patient Advocacy - Learning to Be Better Advocates

56 patient advocacy leaders representing 23 European cancer patient networks gathered in Lisbon at the end of February 2018 to participate in the 3rd edition of the ESO Masterclass in Cancer Patient Advocacy "Working Towards Stronger and More Effective Advocacy in Europe", organized by the European School of Oncology (ESO). We looked at how we can improve our organisations, face the challenges that are so similar to all advocacy groups, and be as effective as we can be for our patient community.

Teodora Kolarova, INCA Executive Director, who represented INCA on the Masterclass Steering Committee, showcased the results of the INCA Survey on Unmet Needs at the Evidence-based advocacy: how to increase impact session on Sunday, February 25. In her talk, she highlighted the notably differing perspectives of patients and medical professionals about the quality of information given to patients on the disease and treatment options available.

Building on the findings of this research, INCA has committed to take actions to improve information for patients and education about NETs for healthcare professionals, as well as to encourage more support for research with a stronger patient voice and more funding to help patients be active partners in the treatment process. The audience was impressed by the scope of the project and the huge potential for further reach, with the translations of all resources into 7 languages.

INCA Members' News

AMEND Receives Grant to Roll Out Services Nationwide


AMEND was pleased to receive a small grant from the UK’s Big Lottery Fund to help provide its services on a more local level. The grant enables AMEND to recruit around 10 new volunteers from around the UK to become Regional Representatives of the charity. The new roles will include responsibilities such as being a contact person for fellow members in their area, organising regional meetings for peer support and information, and in some cases, representing AMEND at hospital clinics to speak directly with visiting patients.  AMEND will be providing the new recruits with bespoke training delivered by our own Counsellor.  AMEND CEO, Jo Grey said, ‘I am very much looking forward to working with our new Regional Representatives and for them to really get to know the patients and health professionals in their region. This is something that our members have wanted for many years, so it is wonderful to be able to kick-start this project in our 15th anniversary year.’

The Carcinoid Cancer Foundation Celebrated its 50th Anniversary


The Carcinoid Cancer Foundation (CCF) celebrated its 50th anniversary on March 7, 2018 – yes, CCF is fifty years old, the oldest carcinoid/neuroendocrine tumor foundation in the United States and the world!  In recognition of this special anniversary, a flag was flown over the U.S. Capitol building in Washington, DC. CCF also released the first video in a new 50th anniversary series, beginning with a feature on Dr. Richard Warner, founder of CCF. The series is a collaboration with Lexicon Pharmaceutical's Fit-to-Fight program. You can see the video here on CCF’s YouTube channel or on CCF’s Facebook page.  CCF also presented a Facebook Live program with Dr. Warner and his son, Keith Warner, CEO of the Carcinoid Cancer Foundation. There were so many questions during the event we could have gone on for far longer than the hour we planned for the live program!  

CarciNor Norway Welcomes a New Chair after 10 Years of Tore Aasbu's Exceptional Leadership


CarciNor Norway held their AGM in Sandefjord (Southern Norway) on March 16th 2018. More than 100 delegates from all over Norway participated. Tore Aasbu resigned as chairman after 10 years “at the helm”. Tore has done a tremendous job during these years and thanks to his great effort and dedication, the Norwegian NET patient advocacy group - CarciNor is a highly respected organization both in Norway and internationally. Mona Fevang, Deputy Chairman, gave a speech to Tore thanking him for all he has done for the NET community. He was given a lovely picture of two zebras cuddling each other called ‘Friends’, which was painted by one of the organization's members. Tore has agreed to be a deputy member of the Board for a period of time to ease the transition of his knowledge to the new board. Tore Aasbu has also served on the INCA Board, and he was quite moved to hear the kind words of gratitude in the address to him, specially sent by INCA for the event. Mr. Erik Hansen was elected  Chairman of CarciNor.

Education on NETs - a Major Focus for CNETS Canada


CNETS Canada is planning 5 face-to-face Patient Education Days across Canada in 2018. These sessions are unique opportunities for patients to have direct contact with the doctors working in this field in their local communities and they also offer an excellent opportunity for networking with other NET patients, families and caregivers.  We are also excited to be hosting our first French NET Patient Conference in Montreal, on April 14, 2018.

In spring 2018, CNETS Canada will also launch a new strategy for NET Cancer Awareness in Canada. The digital campaign concepts aim to increase awareness of NETs and provide education to both doctors and the general public. Stay tuned for the Canadian NET Cancer Awareness digital campaign!

NET Patient Foundation UK Surveys Merkel Cell Carcinoma Patients' Needs and Provides Support


The NET Patient Foundation is dedicated to supporting anyone affected by any neuroendocrine cancer diagnosis. We are also very aware that some of the rarer forms of neuroendocrine cancer have significantly less resource. One of these rare forms is a skin neuroendocrine carcinoma - Merkel Cell Carcinoma (MCC). We  have been working on understanding the needs of the MCC Community, liaising with UK experts to deliver useful information and support to this group of patients and their loved ones. To date we have a global survey, short and simple, that we are asking anyone affected by MCC  to complete, we have made contact with online communities to help support completion of the survey, and 200 HCP’s. We have produced a 12 page guide for patients and this will be disseminated in the next few weeks across the UK. We have a dedicated space on our website for MCC information, a support nurse in the community and free psychological therapy available. 

It has also been important to actively seek support from research organisations,  skin cancer organisations and industry.

NET Research Foundation Awards Six Grants Totaling $1.85 Million to Expand Understanding of NETs

The Neuroendocrine Tumor Research Foundation (NETRF) awarded six new research grants totaling $1.85 million to leading academic institutions around the world. The goal of the funding is to improve current treatments for neuroendocrine tumors (NETs)

“We are funding projects with the potential to be rapidly transitioned from bench to clinic because time is critical to patients with a rare and advancing cancer,” said Elyse Gellerman, NETRF chief executive officer. “NETRF looks to these funded scientists to help solve critical challenges faced by NET patients, families, and clinicians.”

“The translational and clinical projects we funded are exciting, ambitious, and diverse, and tackle fundamental problems in NETs, from finding novel and effective ways to block metastases, to creating new radionuclide therapies, and much needed experimental models,” said Effie Tzameli, Ph.D., NETRF director of research.

The grants fund clinical, translational, and basic research in the United States, Australia, Switzerland, and the United Kingdom. Two of the studies will work towards refining approaches for Peptide Receptor Radionuclide Therapy (PRRT), a treatment modality expanding in the U.S. following the January FDA approval of lutetium Lu 177 dotatate. Other grants focus on developing laboratory models or identifying clinical biomarkers to support drug development. One grant explores a target to inhibit metastasis in pancreatic NETs. All the studies will collectively improve insights for personalized medicine in NETs.

“These grants bring us closer to improving the delivery of care with exciting translational and clinical studies that help us work towards improving and expanding patients’ treatment options," said George Fisher, M.D., Ph.D., co-chair, NETRF Board of Scientific Advisors.

More from

PRRT One Step Closer to Being Funded for NET Patients in New Zealand

The Unicorn Foundation New Zealand  has been verbally advised of the outcome of the recent Pharmac Pharmacology and Therapeutics Advisory Committee (PTAC) committee. They have agreed with the recommendation to fund PRRT for NET cancer patients in New Zealand!
This is a hugely positive step forward, however there is still more work to be done to get the funding over the line. Unicorn Foundation New Zealand will spend the next few months working with Pharmac and NET clinicians to outline all the infrastructure needed to be able to deliver PRRT in New Zealand. Once all the information has been gathered, it will be ranked against all other treatments that Pharmac is considering for funding – hopefully PRRT will make it to the top of the list and we will do everything we can to help.

"Thank you to every single person who has helped, whether you have fundraised for us, donated, or signed petition letters or just following our social media, every bit really does make a difference. This has been many years of work to get to this point and we are so grateful to every single one of you in our Unicorn community.", said Unicorn Foundation New Zealand CEO Siobhan Conroy.

Medical  News

NET Patients Celebrate 20 Years of Care with First Specialized NET Unit at Royal Free Hospital, UK

Patients and their carers, physicians, nurses and researchers  celebrated the 20th anniversary of the neuroendocrine tumour (NET) unit at the Royal Free Hospital, which is helping tackle a rare condition known as neuroendocrine (carcinoid) tumour, sometimes referred to as the ‘quiet cancer’.

The Royal Free Hospital NET unit receives approximately 20 new referrals each month, from across the UK and abroad. Since it was established in 1998, the service has grown from 30 to more than 1,800 patients.

To mark the anniversary, patients have contributed to a series of films discussing their experiences of this rare cancer, as well as the NET unit. Rose Lee, 76, from Broxbourne, Hertfordshire, said: “I’ve been coming to the Royal Free Hospital for 14 years now. I was referred from my local hospital by a doctor who thought there might be hope for me here. I was practically dying – my brother had found me collapsed on the floor. Initially the doctors tried chemotherapy but that didn’t work and nor did radiotherapy."

Professor Martyn Caplin, consultant in gastroenterology and hepatobiliary medicine and the clinical lead of Royal Free Hospital’s NET unit said: “Over the years we have developed a cutting edge programme of medical management and exceptional research. We are a truly multidisciplinary team and every member including administrators, dietitians, doctors and nurses is important to the success of the unit. Our patients have all been an inspiration and we try and learn from every patient’s experience to enhance the outlook for the future.”

In 2011 the Royal Free Hospital was the first NET Centre in the UK to be independently audited and awarded by the European Neuroendocrine Tumor Society the accolade of ‘European Centre of Excellence’.

Dr. Christos Toumpanakis, consultant in gastroenterology and neuroendocrine tumours, said: “Our research across Royal Free London and University College London covers all types of NETs including gastrointestinal, pancreatic and bronchial NETs.  The Royal Free Hospital NET unit has been a major contributor to virtually all the pivotal clinical trials over the past 20 years. We attract world class talent and we are internationally recognised.”

Lead NET clinical nurse specialist, Philippa Davies, said: “Our patients tell us they find their nurses invaluable in their care as we are able to help them emotionally as well as medically and are able to reassure, support and answer any questions they may have over the phone between clinics.”

More from
Royal Free Hospital.

Nutrition in NETs Survey

Health Professionals with experience managing patients with a NET are invited to participate in a short online research survey, which aims to explore the experiences of health professionals regarding the nutrition issues and management of patients diagnosed with a NET, and summarise international nutrition practices. 

This survey is part of a research project being carried out by staff at Peter MacCallum Cancer Centre and The University of Melbourne, Australia; and is supported by the Victorian Cancer Agency, Department of Health and Human Services, and Austin Health, Australia. The coordinating principal investigator will use results of the survey as part of their PhD studies.

The survey is voluntary will take approximately 5-10 minutes to complete. Responses to the survey will be anonymous and participants will not be asked to provide their name, or the name of their workplace, at any stage during the survey. Consent to take part will be assumed upon completion of the survey.

All NET health professionals including medical oncology, surgical oncology, gastroenterology, endocrinology, nuclear medicine, nursing and dietitians are invited to participate.

The online survey can be accessed here: 
Nutrition in NETs Online Survey
For questions regarding this research and survey please email the coordinating principal investigator – Ms Erin Kennedy, Senior Dietitian/PhD Candidate
Information flyer can be found here: 
Nutrition in NETs Survey Flyer

NORD to Collaborate with FDA on Pilot Patient Engagement Activity


Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions

Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would help FDA medical reviewers better understand patient experiences with their rare diseases.

“Our goal is to facilitate the patient’s voice being heard more directly in the regulatory decision-making process, an invaluable opportunity for the rare disease community as a whole to advance medical research and new product approvals,” said Peter L. Saltonstall, president and CEO of NORD. “It is important for FDA to understand, from the patient perspective, disease burden, management of symptoms, daily impact on quality of life, and patients’ risk tolerance. Patients and caregivers bring a pragmatic, realistic perspective about what they are willing to deal with in terms of potential risks and benefits for new therapies.”

The FDA and NORD will work together in identifying patient community representatives and coordinating listening sessions where patients can share their experiences with FDA review division staff. At the request of review divisions, the listening sessions will be organized through the FDA’s Patient Affairs Staff (PAS) in collaboration with NORD. PAS will work with the review division to draft questions for the patients, and work with NORD to facilitate the discussion between the requesting review division and the patient community.

The FDA has instituted a number of programs to bring the patient perspective to the product review process, consistent with legislation enacted by Congress and advanced by NORD.

There are 7,000 rare diseases that affect 200,000 or fewer Americans. The vast majority still have no treatment.
World of NETs

Famous Bollywood Actor Irrfan Khan Diagnosed with NET


Bollywood actor Irrfan Khan has revealed he has been diagnosed with a rare tumour. The 51-year-old Indian star told his fans at the start of the month that he had received devastating news that he has a rare disease. However, he did not share any details, telling his followers he would discuss it further when he had taken time to understand what he is facing. Later, he revealed it is a rare tumour – called neuroendocrine tumour – which could metastasise into cancer. Khan tweeted to his 1.9 million followers: ”Life is under no obligation to give us what we expect” – Margaret Mitchell.

‘The unexpected makes us grow, which is what the past few days have been about. Learning that I have been diagnosed with NeuroEndocrine Tumour as of now has admittedly been difficult, but the love and strength of those around me and that I found within me has brought me to a place of hope. The journey of this is taking me out of the country, and I request everyone to continue sending their wishes. As for the rumours that were floated NEURO is not always about the brain and googling is the easiest way to do research ;-) To those who waited for my words, I hope to be back with more stories to tell.’
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