Victory Net initiatives raise awareness of NETs and boost fundraising.
NET patients from all around the globe shared their routes to diagnosis on NET Cancer Day 2020 to highlight the challenges that many patients and clinicians face around delayed diagnosis. According to the Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN) conducted by INCA, 46% of NET patients have advanced stage neuroendocrine cancer by the time they are correctly diagnosed. For many of these patients a cure is not possible. Early diagnosis is the key to improving patient outcomes.
Help raise awareness and spread the word further than ever on this November 10 by making NET patient challenges at time of diagnosis and #LetstalkaboutNETs a global conversation – both online and throughout all communities.
Watch the patient selfie video carousel.
Think Zebra, you can’t detect it, if you don’t suspect it!
The Victory Net Foundation is proud to participate in The INCA Boot Camp for Research Advocates, the first disease specific program for patients advocates in NET cancers.
The INCA Boot Camp for Research Advocates is composed of 18 neuroendocrine cancer patients from Africa, Asia, Australia, Europe and North America. The Boot Camp for Research Patient Advocates is a 9-month online training program that will run from June 2020 to February 2021, specifically for NET patient advocates representing member organizations of INCA. The program will be carried out by the Patvocates Network via monthly webinars, covering specific topics such as knowing the disease, existing treatment, research and development, clinical research, processes and more.
The scheduled online sessions are as follows:
- Online meeting – 15 July – How medicine development works – Why patient engagement matters
- Online meeting – 12 August – Statistics and why they matter
- Online meeting – 14 September – The importance of Patient Reported Outcomes and Quality of Life measures
- Online meeting – 12 October – Evidence based patient advocacy
- Online meeting – 19 November – Patient advocacy and community advisory boards
- Online meeting – 20 January 2021 – Big Picture – How it all comes together – from R&D to access
- Online meeting – 17 February 2021 – Getting to the next level : training and education to become a powerful advocacy patient
The program aims to educate leading NET patient advocates, who would share their knowledge in their local communities and encourage more active patient involvement in clinical trials from the outset. Simone Leyden, Chair of the INCA Research Committee, has emphasized the importance of this project for INCA and for the whole NET patient and advocate community.
Thank you INCA Alliance for making this possible!
Cancer patient advocates from 26 European countries, active across a wide spectrum of cancer types, spent three days in July at the first training course, developed and run by advocates.
The intensive training ‘Academy’ was organized by WECAN, an informal network of leaders of cancer patient umbrella organizations, of which INCA is a member. Ambitious and forward-thinking as it was, the academy can be considered a milestone for European advocacy in many ways.
The course sessions covered essential practical skill sets: how to establish, manage, fund and run a non-profit organization, how to gather patient- generated evidence, how to get their voices heard. A primer in healthcare systems, policy and access to new treatments across Europe was also offered. The advocates were introduced to the world of medical research, drug development, clinical trials, evaluating evidence, and patient involvement in research.
The course gathered people with varying experiences and needs: leaders of national and/or umbrella organizations who were looking to train up their teams; patients who are interested in setting up an advocacy organization.
INCA had 5 participants in the educational initiative: Mette Jackson (CarciNor Norway), Mark McDonnell (NET Patient Network Ireland), Fabienne Pfyffer and James Nagelmackers (Victory NET, Switzerland) and Teodora Kolarova (INCA Executive Director).
Half the presenters were patient advocates themselves. The topics and presentations were extremely relevant, and delivered with notable passion and motivation. The content and the structure of the WECAN Academy built on work done by many different groups of patient advocates over previous years.
Some of VictoryNET supporters set of on the Lyke Wake Walk challenge accomplishing 64km hike through the North Yorkshire Moors in 18 hours.
It required a hard and painful effort all done with bravery and high spirits.
Date: Saturday 06th July (full dates 05-07th July)
21 organizations supporting NET patients from 5 continents met on 18-19 June in Plovdiv, Bulgaria to take part in the 7th INCA Global NET Patient Advocate Summit. The INCA Summit is an annual event that brings together the world’s leading patient advocates and medical experts in NETs to focus on latest developments in the NETs field, best practices, and major challenges to be addressed. Structured to reflect INCA’s three strategic pillars: raise awareness on NETs, secure access to optimal treatment and care, and advance NET research; the Summit agenda offered valuable insight into all these areas in the context of collaboration.
In 2019, INCA Summit speakers came from a variety of fields of expertise to suggest ways of bridging the gaps in information and communication, quality care provision and research in NETs. The psychotherapist and counsellor Kym Winter, working closely with AMEND and NET Patient Foundation UK, gave a profound overview of the specific unmet need for psychological support for NET patients due to factors like high level of unpredictability of the disease, logistical burden and the understanding of being rare. Tips and lessons learned on delivering the right information for patients at the right time were provided by Jo Grey from AMEND, UK. Cathy Bouvier from NET Patient Foundation, UK shared their expertise in educating healthcare professionals about NETs.
Prof. Vikas Prasad from the Ulm University Hospital, Germany, talked about what is new in PRRT and the need to take into consideration patients‘ quality of life and toxicity levels in treatment decision-making to truly deliver personalized medicine. Dr. Sugandha Dureja, nuclear medicine expert in theranostics and Chair of CNETS India, presented on how access to PRRT can be improved and introduced the concept of the 3 As (awareness, availability and ability/expertise).
Simone Leyden, INCA President and CEO of Unicorn Foundation, Australia outlined the mechanism of Health Technology Assessment and the challenges of reimbursement decision-making.
Breakthrough research in NETs, based on the impact of genetic studies, was very well outlined by Prof. James Howe, Chair of NANETS presented on. This picture was complemented by Prof. Marianne Pavel, ENETS President-Elect, who profiled the potentially practice-changing clinical trials in NETs. Tamas Berezcky from the European Patients’ Academy on Therapeutic Innovation (EUPATI) expanded on patient involvement in research and offered tips and resources for growing research advocacy expertise. The significance of partnering with patients to improve NET care was further highlighted by Dr. Simron Singh, Co-Chair of CommNETs, who elaborated on a few projects of Cancer Care Ontario, set to provide person-centered care.
In the capacity-building session, Yoshiyuki Majima, PanCAN Japan spoke about the key to success when working with regulatory bodies. An insight into fundraising strategies based on the experience of NET Research Foundation was shared by Josh Mailman.
A VictoryNet delegation took part again in the ENETS (European Neuroendocrine Tumour Society), Symposium, which brings together over 1,600 delegates from around the world. Here, we updated and shared research, testing and training knowledge and presented and promoted our foundation. We invited our Media voices (Alexander Masters and Liz Scarff) to present to INCA their project of a questionnaire to help patients define if they can participate to the AdVince trial. We also invited two nurses from Bern who attended our Seminar in 2016 and are NET specialists.
Length of the Walk : 8.720 km (5.418 miles)
The VictoryNet team (made up of Vince’s family and friends) took part in this well-known event in Geneva.
A Victory Net delegation took part in the ENETS (European Neuroendocrine Tumour Society), Symposium, which brings together over 1,500 delegates from around the world. Here, we updated and shared research, testing and training knowledge and presented and promoted the VNet foundation.
At the initiative of Victory Net and Alexander Masters, the main stakeholders in the fight against NETs via the AdVince Programme gathered to discuss the progress made in research and clinical trials and bring the donor community up to speed.