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Annual Report 2020 Publisher Published by the European Cancer Patient Coalition

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Annual Report 2020 Publisher Published by the European Cancer Patient Coalition Annual Report 2020 Publisher Published by the European Cancer Patient Coalition Correspondance European Cancer Patient Coalition Rue Montoyer 40 1000 Brussels Belgium [email protected] © 2021 European Cancer Patient Coalition European Cancer Patient Coalition Board Scientific Committee January – November 2020 Francesco De Lorenzo, Chair until November 2020 Kathi Apostolidis, President Mark Lawler Pietro Presti, Vice President Francoise Meunier Francesco de Lorenzo, Past President Fabio Calvo Jaqueline Daly, Secretary Giorgio Stanta Ken Mastris, Treasurer Meletios A. Dimopoulos Vasile Ianovici Ulrik Ringborg Robert Greene Claudia Alleman Maude Andersson European Cancer Patient Coalition December 2020 Secretariat Ken Mastris, President and Treasurer Antonella Cardone, Director Pietro Presti, Vice President Monica de Vetter Kathi Apostolidis Chris Russ Jacqueline Daly, Secretary Grazia Scocca Maude Andersson Paulína Gono Vasile Ianovici Adela Maghear Robert Greene Clémence Morinière Paula Kenny European Cancer Patient Coalition Klevisa Ceka Audit Committee Charis Girvalaki Aina Laura Errando Constantine N. Nicolaides, Chair Sara Badreh James Caldwell Matias Olsen Roberto Persio Max Schravendeel • 2 • • ANNUALREPORT2020 • Table of Contents 1 The European Cancer Patient Coalition ....................................................................5 2 The European Cancer Patient Coalition’s Mission ....................................................6 3 The European Cancer Patient Coalition’s Strategy ....................................................7 4 Messages from the Presidents .................................................................................8 5 Message from the Director .....................................................................................11 6 Overview of 2020 ....................................................................................................12 6.1 EU Beating Cancer Plan and Mission on Cancer ............................................................ 12 6.1.1 Challenge Cancer Intergroup ......................................................................................... 12 6.1.2 Death of ECPC Founder Lynne Fauld Woods ............................................................... 13 6.1.3 COVID-19 Pandemic ......................................................................................................... 14 6.2 Calendar of main activities in 2020 ................................................................................... 15 6.3 ECPC Board Members engagement with external stakeholders ................................ 18 6.4 Communication..................................................................................................................... 19 6.4.1 ECPC Website .................................................................................................................... 19 6.4.2 Social Media Accounts ..................................................................................................... 19 6.4.3 Newsletter ........................................................................................................................... 20 6.4.4 Publications ........................................................................................................................ 20 6.4.5 Media ................................................................................................................................... 21 7 Campaigns .............................................................................................................22 7.1 World Cancer Day ................................................................................................................. 22 7.2 Nutrition and physical activity ............................................................................................ 22 7.3 Bladder cancer campaign ................................................................................................... 22 7.4 Head and Neck Cancer Care in Europe ............................................................................ 23 7.5 Personalised Medicine Awareness Month ...................................................................... 23 7.6 Non-melanoma Skin Cancer Awareness Day ................................................................. 24 7.7 Merkel Cell Carcinoma ......................................................................................................... 25 8 Health Policy ..........................................................................................................27 8.1 EU Joint Action on Rare Cancers (JARC) ......................................................................... 27 8.2 Transforming Breast Cancer Together ............................................................................. 27 8.3 Cancer Mission Europe ........................................................................................................ 28 8.4 Parliamentary Intergroup on Cancer ................................................................................. 29 8.5 ERN EURACAN ...................................................................................................................... 30 8.6 iPAAC ....................................................................................................................................... 30 8.7 Cancer Related Complications and Comorbidities Initiative ........................................ 31 8.8 The Right to be forgotten for cancer survivors ............................................................... 33 • ANNUALREPORT2020 • • 3 • 9 Education ................................................................................................................36 9.1 Toolkit on Health Technology Assessment ..................................................................... 36 9.2 eLearning Module on Biosimilars ...................................................................................... 37 10 Advocacy and capacity-building activities ...........................................................38 10.1 ECPC Annual Congress 2019 ........................................................................................... 38 11 EU Health and research programmes ...................................................................39 11.1 European Health & Research Projects ........................................................................... 39 11.2 IMI BD4BO PIONEER (2018 – 2023) ............................................................................... 39 11.3 QUALITOP (2020 – 2024) ................................................................................................. 39 11.4 DIAdIC (2019 – 2023) ........................................................................................................ 40 11.5 IMI PREFER Patient Preferences (2016 -2021) ............................................................ 40 11.6 H2020 ImmunoSABR metastatic lung cancer (2017 - 2022) .................................... 41 11.7 LEGACy (2019 - 2022) ....................................................................................................... 41 11.8 LifeChamps (2020 – 2023) .............................................................................................. 42 11.9 Instand-NGS4P (2020 – 2024) ........................................................................................ 42 11.10 Advisory roles ................................................................................................................... 43 11.11 Transcan-2 European Research Area (2015 - 2019) ................................................. 43 11.12 ELBA (2018 - 2021) .......................................................................................................... 44 11.13 HTx (2019 - 2023) ............................................................................................................ 44 11.14 PREDICT (2017 - 2021) ................................................................................................... 44 11.15 Palliative Sedation (2019 - 2023) .................................................................................. 45 12 Collaborations & Partnerships ..............................................................................46 12.1 European Medicines Agency ............................................................................................ 46 12.2 ESMO Guidelines ................................................................................................................ 46 12.2.1 2020 ESMO Congress .................................................................................................... 46 12.3 E.C.O. Advisory Committee ............................................................................................... 47 12.4 All.Can ................................................................................................................................... 47 12.5 Union for International Cancer Control (UICC) ............................................................. 47 12.6 Organisation for European Cancer Institutes (OECI) ................................................... 47 12.7 European Organisation for Research and Treatment of Cancer (EORTC) .............. 48 12.8 European Association of Urology (EAU) ........................................................................ 48 12.9 European Alliance for Personalised Medicine (EAPM) ............................................... 48 12.10 Cancer Drug Development Forum ...............................................................................
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