The NET Platform members call for more action on NETs
November 30, 2016|
By Tore Aasbu|
The NET Platform is the coalition of physicians, researchers, patient representatives, nurse specialists
and industries working to address the needs of the NET community.
The NET Platform members call for more action on Neuroendocrine Tumours (NETs)
Neuroendocrine tumours (NETs) are an increasingly common, yet poorly understood form of cancer. Given the benign or non-specific symptoms of the disease, patients are often misdiagnosed for many years. The result is that by the time the correct diagnosis is in place, life expectancy is drastically reduced.
The NET Platform acknowledges the fact that the European Union has shown its commitment to supporting the fight on rare disease, however numerous challenges in the management of rare cancers such as NETs remain.
Photo: Teodora Kolarova, INCA, MEP Charles Tannock, MEP Françoise Grossetête , Antoni Montserrat, Senior Expert on Cancer and Rare Diseases in the European Commission.
MEP Françoise Grossetête thanked all participants for their active involvement and commended them on the impressive progress made since last year’s meeting. She assured the NET Platform stakeholders of renewed and continuous support, to translate the Policy Recommendations on NETs, which are built around the three axes of knowledge and diagnosis, patient journey, and research and innovation, into reality.
Today’s society faces low awareness, difficult early diagnosis, inequalities in access to care and treatment across Europe and the need for support to research and innovation. All of these are dimensions where further efforts are mandatory to improve the current situation.
Photo: Teodora Kolarova, INCA Executive Director, MEP Charles Tannock, MEP Françoise Grossetête.
Teodora Kolarova, Executive Director of the International Neuroendocrine Cancer Alliance (INCA) reminded that seven out of every hundred thousand people are diagnosed with NETs each year, and given that such tumours are complex and unpredictable, raising awareness of the disease amongst the medical profession is crucial. “Synergy does matter, and it is only by joining efforts on a common platform that we can transform the future of NET care, so our call on the European Union and on the Member States is to dedicate more funds to research these difficult-to-diagnose cancers.”, she noted.
Prof. Massimo Falconi, ENETS President, highlighted one of the major unmet medical needs in research and innovation in NETs: “We, as NET clinicians need access to a well-structured and sound database, meaning a unified NET registry, since science relies on information.”
Prof. Ruszniewski from ENETS added: “Due to the complexity of NETs and their presentation, the patient involvement is much more needed than in other disease areas, and physicians value and seek the patient perspective to better understand the condition.”
Please find attached the report and main conclusions from the discussions from The NET Cancer Day 2016 event, here ….
Let’s Talk About NETs
has been created by the International Neuroendocrine Cancer Alliance (INCA) ahead of World NET Cancer Day (Thursday, 10 November) to raise awareness for the disease and to draw attention to the need for timely diagnosis, and access to treatment and care for all patients.
Governments and healthcare providers should proactively consult NET patients and medical experts on NETs when elaborating policies affecting NET patients. The NET Platform is committed to continue to work collaboratively on the three key topics for the community: patient journey, knowledge and diagnosis, and research and innovation, to identify possible improvements for NET patients.
The International Neuroendocrine Cancer Alliance (INCA), whose mission is to be the global voice in support of neuroendocrine cancer patients, is an alliance of 20 member organisations from 17 countries around the world.
Patients representatives from INCA and INCA member organisations participating at the event; Teodora Kolarova, INCA, Bulgaria, Dirk Van Genechten, Vzw NET en MEN Kanker Belgium, Christine Rodien Louw, APTED (Association de Patients porteurs de Tumeurs Endocrines Diverses), France, Mark McDonnell, NET Patient Network, Ireland.
Nothing about us without us! Organisations representing patients with NETs should be consulted on all policy and legislation that will affect NETs patients.
About The NET Platform
The NET Platform is the coalition of physicians, researchers, patient representatives, nurse specialists and industries working to address the needs of the NET community.
To address the numerous challenges in the management of rare cancers such as neuroendocrine tumours (NETs), The NET Platform presented concrete policy recommendations on how NET care can be improved for EU citizens. The codified outline the challenges of NETs, their impact on patient lives and the importance for support to research in this field, by addressing 3 main themes: Knowledge in diagnosis, Patient journey, and Research and Innovation. Read more here ….