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 Summit - an Inspirational and Constructive 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.

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 15^th anniversary year.’

The Carcinoid Cancer Foundation Celebrated its 50th Anniversary

 

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

Education on NETs - a Major Focus for CNETS Canada

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 NETRF.

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.

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

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Famous Bollywood Actor Irrfan Khan Diagnosed with NET