INCA Monthly Newsletter - January 2018 News Update
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At the Second Patient-Physician Symposium INCA and Medical Leaders Will Discuss a Roadmap of Actions to Address Unmet Needs of NET Patients

INCA is getting ready for the second Patient-Physician Symposium, entitled Unmet Needs of NET Patients: From Identification to Action to be held as part of the scientific program of the 15th ENETS Annual Conference, in Barcelona (7-9 March 2018).
The Symposium is a joint effort by NET patient and medical leaders to identify and address issues that impede optimal care and research. It will feature an overview of NET Cancer Awareness Day and the launch of INCA White Paper on Unmet Needs in NETs by Simone Leyden, and a rich selection of perspectives on the information NET patients need to have and the benefits of patient involvement in research, offered by NET patients, expert clinicians and NET nurse specialists.
INCA welcomes everyone who will be at the 15th Annual ENETS Conference and is interested in the topics above, to join the INCA-ENETS Symposium on March 9, at 9:35 am in Meeting Room 111 at CCIB.
The preliminary program of the ENETS Conference can be found here.
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INCA to be Represented on the ECCO Patient Advisory Committee

European Cancer Organisation (ECCO) invited INCA to nominate a representative to serve on the ECCO Patient Advisory Committee (PAC) for the next mandate (February 1, 2018 - Feb 1, 2020).
Being committed to endorse patient interest agenda, ECCO created the Patient Advisory Committee (PAC) 2008, to provide European patient organizations and bodies involved in patient care with a platform to express their expectations in solidarity with the professional organizations and afford ECCO direct insight into the issues and challenges faced by cancer patients.
The ECCO PAC is composed to reflect the breadth of predominantly European cancer patient advocacy groups and may include other European public health patient advocacy groups who have a substantive interest in cancer while ensuring a majority of the seats assigned to European cancer patient advocacy groups. International cancer patient advocacy groups will be considered when there is no European equivalent covering the same disease area.
This invitation certainly offers a valuable opportunity for INCA to help ECCO optimize patient-centered activities, as well as place NET cancer patients' specific interests higher on the cancer community agenda. The INCA Board appointed INCA Executive Director, Teodora Kolarova to serve as a representative for INCA on the ECCO Patient Advisory Committee. More infomation can be found on ECCO website.
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INCA Shares Unmet Needs Findings with Patient Organizations Tackling Rare Cancers Challenges

From the 2nd to the 4th of December 2017, Rare Cancers Europe (RCE), the European Society for Medical Oncology (ESMO) and the European School of Oncology (ESO organised) a specific training course for rare cancers patient advocates. The event brought together in Milan patient advocates from across Europe, including Turkey and Russia, to exchange views and ideas with clinicians and researchers, involved in the ESO-ESMO-RCE Clinical Update on Rare Cancers event running in parallel and on the same venue.
The last session on Saturday offered inspiration from several rare disease groups on what patients can do to have an impact and bring about change in their community. Teodora Kolarova presented INCA recent experience with the White Paper on Unmet Needs for NET patients, which has used tools such as surveys to produce instrumental data from patients and healthcare professionals. The audience was captured by the INCA infographics and motion graphics campaign, which reflected patient organizations' ability to be active across all media. A number of groups looking to raise the awareness about their disease recognized NET Cancer Day as a benchmark achievement.
All presentations from the training course have been published on Oncology Pro and are also accessible via the RCE website.
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AMEND Marks its 15th Anniversary

2018 marks the 15th year of AMEND’s work to provide information resources and support services to families affected by multiple endocrine neoplasia and associated tumours and disorders. Therefore there is plenty going on this year, such a few highlights:
• AMEND members will be taking part in 2 major surveys. The European Multiple Endocrine Neoplasia Alliance (EMENA), of which AMEND is a member, will be asking patients with MEN to tell us about the state of care for MEN within their EEA countries. The other will be a survey done in collaboration with the NET Patient Foundation as part of our Project Research Road Trip. The survey aims to get a better idea of the thoughts of patients with endocrine and neuroendocrine tumours in the UK with regard to current and future research.
• AMEND was delighted to work with Dutch patient group, Belangengroep MEN, to develop Dutch translations of our kids’ cartoons on MEN1 and MEN2. They can be viewed here. If any other group is interested in adapting and translating the cartoons for its patient communities, please feel free to get in touch with Jo Grey directly to discuss Licence fee and editing costs.
• AMEND is launching a brand new website this month at www.amend.org.uk. The new site better reflects AMEND’s strong branding, is much more inviting and most importantly, more engaging for younger people. Already launched is AMEND’s latest patient information resource; ‘Working with your Medical Team’. This new title explains the composition and roles of the MDT and Centres of Expertise, and gives helpful tips on making the most of hospital appointments and communicating with medical professionals. It is free to download from the website.
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Every Day is NET Cancer Day: APTED France Gathered Patients and Physicians in Nantes
On 26th January, 2018, APTED held a meeting with patients and healthcare professionals in Nantes, France. The meeting was organized in partnership with Renaten, GTE (Groupes d'étude des tumeurs endocrines), Central University Hospital of Nantes and the Central University Hospital of Angers.
Some of the topics under discussion covered:
• surgical modalities in Pancreatic NETs: immediate or delayed surgery. When? Why?
• the multi-disciplinary consultation meetings;
• What to do when the primary tumor is not identified?
• carcinoid heart disease.
More from APTED.
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CNETS Canada Launches a Call for Applications for the 2018 NET Research Grants on February 15
CNETS Canada has lots of exciting plans for 2018 in keeping with its priorities to provide support, education and awareness for Canadians on all aspects of Neuroendocrine Tumours (NETs).
Fundraising events continue to be critical for CNETS Canada to be able to support research initiatives specific to neuroendocrine cancer. For 2018 CNETS Canada is participating in 4 major fundraisers. The NET patient community has continually demonstrated a strong commitment to supporting CNETS Canada’s fundraising efforts. Each year, research funding priorities are determined through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board. The past recipients were: 2016 NET Research Grant Recipients, 2017 NET Research Grant Recipients. On February 15, CNETS Canada will launch a call for applications for the 2018 NET Research Grants. The 2018 Canadian NET Research Grants Recipients will be announced in July 2018.
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NET Patient Foundation's Data Collection Project Shows Increase in Incidence of NETs throughout the UK

NET Patient Foundation shared some of their data collection project within the UKINETs community in December 2017 illustrating the increase in incidence of NETs throughout the UK.
Historically the incidence and prevalence of neuroendocrine tumours (NETs) has been difficult to establish due to issues with disease coding and data collection. Studies by Ellis et al in 2006 estimated the incidence of gastroenteropancreatic neuroendocrine tumours (GEP NETs) to be 1.3 per 100,000 per year (incidence hereafter given as cases per 100,000). However, the SEER USA data suggests a four-fold higher incidence, and prevalence of 35 per 100,000. This study aimed to identify the incidence and prevalence of NETs over a ten-year period utilising the Public Health England (PHE) population-based cancer registry. This study has clearly demonstrated that incidence of NETs in England is significantly higher than previously reported. The data demonstrate similar incidence and prevalence rates to those reported in the SEER database. Importantly, it highlights that colorectal and lung NETs are the most common primary sites.
More from NET Patient Foundation.
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