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INCA Monthly Newsletter - May 2019 News Update
INCA Members' News
Member in Focus

Medical News

Insights from NET Patients at ASCO Annual Meeting

The INCA abstract “Access to diagnostics and treatment of neuroendocrine tumors (NETs): The difference between patient perception and reality” was selected for online publication at 2019 ASCO Annual Meeting, taking place May 31 – June 4, 2019 at the McCormick Place Convention Center in Chicago, Illinois.  This year, more than 6,200 abstracts were received, which were reviewed by ASCO Scientific Program Committee and Leadership. More than 50 000 healthcare professionals are expected to visit ASCO in 2019.

According to the global survey on unmet needs in NETs conducted by INCA in 2017 among 443 participants, both patients and HCPs, there remains considerable disparity in what patients feel is available to them in terms of the latest tools and treatments, compared to what actually is. Conversely, 70% of HCPs believe there is wider availability of multidisciplinary teams (MDTs), while 34% of patients did not have access to an MDT.

Read the full abstract here.

INCA Global NET Patient Summit in the European Capital of Culture 2019

Over 25 organizations supporting NET patients from 6 continents will meet on 18-19 June in Plovdiv, Bulgaria for the 7th INCA Global NET Patient Summit. The 2019 INCA Summit will focus on advancing the collaboration with the medical leaders, capacity building for the NET patient groups, best practice sharing among the NET patient advocates worldwide, networking to achieve common goals, and a consensus on INCA Activities 2020. The Summit agenda expands on some major issues like provision of timely and comprehensible information to NET patients, impact of the global patient voice on research, improving NET patients’ access to optimal care and treatment worldwide.

One of INCA's strategic imperatives is to empower its member organizations to be better and stronger advocates for NET patients. INCA collaborates with top experts in the NET field to provide a common platform where NET patients' priorities can be in focus. The leaders of ENETS, NANETS and CommNETS will participate in the Summit, to be joined by experts in patient advocacy and other fields relevant to providing optimal care to NET patients.
INCA Members' News

NET Patient Global Data in a Snapshot in French

APTED has recently published a concise brochure sharing key findings from the Global NET Patient Survey conducted by INCA and NOVARTIS in 2014. You can have a full read of it in French here.

CCF Live on Carcinoid Heart Disease


The Carcinoid Cancer Foundation is pleased to share the most recent in its Facebook Live series, Carcinoid Heart Disease featuring NET Cancer expert, cardiologist Dr. Jerome Zacks. Here’s a link to the Facebook Live event.

NET Italy Organizes an Open Day for NET Patients 

NET Italy will hold an Open Day for NET patients and their caregivers “Our ‘friend’ NET: A Dialogue Between Patients and Doctors” in Modena, Italy on June 22.

The event will facilitate the participation of all  specialists whom a patient will typically meet in the course of his/her NET journey, during diagnosis and  treatment of the disease, in order to guarantee better therapies and quality of life, including the nutritional aspects.

Experiences of patients and their caregivers will be widely presented and discussed. The discussions will be moderated by Prof. Paola Tomassetti (Gastroenterologist and member of NET Italy Scientific Committee),  Mr. Andrea Pamparana (Journalist and NET patient) and by Mrs. Luisa Draghetti and Mrs. Simona Barbi, President and Vice President of NET Italy respectively.

Of course,  patients and their caregivers will be the VIP guests,  so a lot of time will be dedicated to their questions, which will be answered by the doctors attending the event.

NETRF Announces 2019 Neuroendocrine Cancer Research Funding Opportunities 

The Neuroendocrine Tumor Research Foundation (NETRF) has announced a new round of research grant opportunities. Its 2019 Request for Applications (RFA) invites innovative research applications in neuroendocrine tumors (NETs) to increase our basic understanding of these uncommon tumors and lead to the development of more effective therapies. The grants range from $100,000 to $1.2 million to support projects ranging from one year to four years for basic, translational, or clinical research.

This year, NETRF will offer a new Mentored Award, a two-year grant for early career researchers, who are completing post-doctoral, residency, or fellowship positions. This grant is designed to recruit young talented scientists to the NET field at a pivotal point in their careers. Deadline to apply is June 17 2019, learn more.

Member in Focus

Fundación ACIAPO in Focus

Photo: ACIAPO NET patient volunteers for the Nunca es Tarde campaign, We are looking for 1.000 NET. The campaign aims to generate awareness of neuroendocrine cancers in Argentina.

Fundacion ACIAPO was founded by Marta Artigas, its current President, in 1997, in Argentina, with the intention of providing “quality of life” to patients living with cancer and their families. Marta herself is a cancer survivor with a history of cancer in her family. Living through this ordeal, she experienced many of the deficiencies in the system to treat and support cancer patients. This was the principal motivation for founding ACIAPO. Actually this acronym means: “Integral Community Care for Cancer Patients”.

ACIAPO is involved in Prevention and Diffusion, Education, Legal Assistance, and Social Medicine. One of the large projects ACIAPO is currently working on is a campaign to generate awareness of neuroendocrine cancers. This is targeted to social media in general, but also to the medical community and hospitals. The title is “We are looking for 1.000 NET”, applying the phrase in Spanish “Nunca es Tarde”, meaning that it is never too late. However, this also represents the acronym NET.

Having recently joined INCA as a Member, ACIAPO is a pioneer for INCA in Latin America, and the organization is interested in helping to advance the cause in the rest of the continent. ACIAPO hopes that through INCA they can benefit from the shared experiences as to how to further facilitate the treatment and support of cancer patients. This applies to research, tools, social media, government and institutional relations, etc.

In the case of countries like Argentina, it is of critical importance to know what is being done in more developed countries. Both the government and medical communities look up to the EU and USA for many of their decisions regarding cancer and its treatment. Therefore, for ACIAPO it is of paramount importance to be connected with a global patient voice to influence the government and medical institutions, as well as be able to bring tools and alternatives for patient care that will improve their lives via better treatment and survival rates.

Get connected with ACIAPO on Facebook, Instagram, or email
Medical News

Economics of Gastroenteropancreatic Neuroendocrine Tumors: A Systematic Review

Cost-effectiveness and budget impact considerations are inherent  in the  the decision-making process for treatment reimbursement. A systematic review of the economic impact of GEP-NETs was carried out using four databases. It has been published recently in the Therapeutic Advances in Endocrinology and Metabolism. Read the full article here.

ESMO Launches an E-learning Module on Management of Well-Differentiated Pancreatic Neuroendocrine Tumours

The European Society for Medical Oncology (ESMO) has recently published an e-learning module on pancreatic NETs for medical professionals  in its Education Library. The material developed by Dr. Angela Lamarca, a member of the EORTC Gastrointestinal Cancer Group and a faculty member of the ESMO Neuroendocrine, Endocrine Neoplasms and CUP Group, aims to provide an overview of epidemiology, clinical presentation, grading and staging of pancreatic neuroendocrine tumours, the management of well-differentiated PNETs. Read the article here.
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