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 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.
|
|
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.
|
|
|
|