Addressing non-covid patients: COVID-19 lessons learned for more resilient Health Care Systems.
10 Concrete recommendations towards a European Health Union.
From the account of oncological and chronic patients during the pandemic, it emerged how they have been left almost alone for several months, a situation that jeopardized 20 years of prevention. Hence, Active Citizenship Network drafted a Manifesto with 10 recommendations – that has been already signed by 32 associations from 15 countries - addressed to the institutions to remark non-covid patients' unmet needs. Above all, encourage forms of monitoring as “Follow the Money” to monitor together the funds of Recovery Plans that each European country is receiving and engage European citizens to improve health systems. There isthe need to be heard because, as in any reconstruction, the involvement of a large number of active and aware social and civic actors is crucial.  To know more click here.

The XV European Patients’ Rights Day has been celebrated with a virtual event by Active Citizenship Network with its traditional format of a big multi-stakeholder conference focused on the importance of the citizen organizations’ engagement and a multisectoral approach to take action on cross-border health threats, actual and future. The 2021 conference focused on showing and discussing examples of citizen’s engagement in health policies in this particular historical moment: a first day, dedicated to the health challenges faced by non-COVID patients and a second day, focused on the resilience of Healthcare Systems and the national immunization plans.Read more

Click here to read the Conference’s programme
Click here to read the speakers’ biographies
Click here to see the video-recordings of the first and the second day of the Conference
Click here to read the minutes of the first and the second day of the Conference
Click here to read the press release and here for the press review
Click here to see the photos of the event
Click here to read our Manifesto "Addressing non-covid patients: COVID-19 lessons learned for more resilient Health Care Systems. 10 Concrete recommendations towards a European Health Union"

Press review

• THE EUROPEAN FILES (May 2021):How to further engage European citizens to improve the health system and make it more resilient and efficient

• HELP CONSUMATORI (21st May, 2021): Global Health Summit, Cittadinanzattiva lancia 10 proposte alle Istituzioni (IT)

• SANITÀ INFORMAZIONE (6th May, 2021): XV Giornata europea dei diritti del malato: la resilienza dei sistemi sanitari passa per la trasparenza e la cooperazione a livello internazionale (IT)

• IN SALUTE NEWS (6th May, 2021): XV Giornata europea dei diritti del malato: 10 raccomandazioni al Parlamento e alla Commissione Europea (IT)

• HELP CONSUMATORI (6th May, 2021): Giornata dei diritti del malato, un manifesto per i pazienti non-Covid (IT)

• HEALTH EUROPA (6^th May 2021): Supporting nurses on the frontline (for the download, click here)

• HEALTH EUROPA (6^th May 2021): Tackling cancer care inefficiencies in Europe’s future (for the download, click here)

• VITA (6^th May 2021): Giornata europea dei diritti del malato: 10 raccomandazioni al Parlamento e alla Commissione UE (IT)

• QUOTIDIANO SANITÀ (6^th May 2021): Giornata europea diritti malato. Da rete europea di Cittadinanzattiva "dieci" raccomandazioni a Parlamento e Commissione UE (IT)

• IL FARMACISTA ONLINE (6^th May 2021): Giornata europea diritti malato. Da rete europea di Cittadinanzattiva "dieci" raccomandazioni a Parlamento e Commissione UE (IT)

• HEALTH EUROPA (5^th May 2021): Equal and accessible healthcare in the EU (for the download, click here)

• HEALTH EUROPA (5^th May 2021): Patients’ Rights Day: recommendations towards a European Health Union

• TREVISO TODAY (4 May, 2021): XV Giornata europea dei diritti del malato il 5 e 6 maggio (IT)

• HEALTH EUROPA (4^th May 2021): Health at the heart of the conference on the future of Europe (for the download, click here)

• HEALTH EUROPA QUARTERLY Issue 17 (4^th May 2021): special feature: European Patients’ Rights Day (pag. 308- 320) (for the download, click here)

• SOCIETAL IMPACT OF PAIN PLATFORM (April 2021): Read more

• FAMILY MEDICINE AND MEDICAL SCIENCE RESEARCH(Vol.10 Iss.3 No:267 - 26^th March 2021):Towards A European Health Union: The Key Role of the Civil Society and Patients Advocacy Groups for More Resilient Health Care Systems

Vytenis Andriukaitis
Vytenis Povilas Andriukaitis served as European Commissioner for Health and Food Safety in 2014-2019. He has been a practicing surgeon for more than 20 years. He is the co-author of Constitution of the Republic of Lithuania, MP of the Republic of Lithuania for six mandates and led the Lithuanian delegation to the Convention on the Future of Europe. He has been the Minister for Health of Republic of Lithuania from 2012 to 2014.

Marco Annoni
Researcher, author and science-communicator, Marco Annoni owns two PhDs, one in the philosophy of science and one in the theoretical foundations and ethics of the life sciences. Currently, he is a researcher in bioethics at the National Research Council (CNR), Coordinator of the Ethics Committee of Fondazione Umberto Veronesi and Editor-in-chief of the peer-reviewed journal The Future of Science and Ethics.

Kathi Apostolidis
Kathis is the President of the Hellenic Cancer Federation - ELLOK, a national umbrella organization of 40 cancer patient organizations, covering all cancers and a Board Member of ECPC, European Cancer Patient Coalition, after having served as President and Vice President from 2013 to 2020.
Kathi has been actively involved in cancer patient rights since 2005, and supported ACN and the efforts to institutionalize the European Charter of Patient Rights participating and presenting at past celebrations of the European Patients’ Rights Day. She has also initiated in Greece the first advocacy group on cancer patient rights in 2006.

Sebastian Arias
Sebastian Arias is a Global Access Policy Leader in Oncology for Roche Pharma who is currently leading the company's response to Europe’s Beating Cancer Plan. He joined Roche in 2015 and has worked in a number of key positions in Policy and Public Affairs including a Health System Strategy role where he was leading Roche’s engagement on Access Accelerated and City Cancer Challenge, two global public-private partnerships focused on fighting Cancer and NCDs.

Jennifer Baker
Better known as Brusselsgeek, Jennifer has been a journalist in print, radio and television for 20 years, the last 10+ specialising in EU policy. She has worked across a wide range of media, from editing a national daily paper in Malta, to reporting on European affairs for Middle Eastern television, and has a wealth of experience in navigating the political quagmire of the EU.

MEP Brando Benifei
Brando Benifei, European Federalist, is from La Spezia, Italy, and is the Head of Delegation of the Italian S&D MEPs. His main areas of work are Internal Market and Consumers Protection, Employment and Social Affairs, and Constitutional Affairs. He is rapporteur for the Single Market Program and shadow rapporteur for the European Social Fund Plus. He is active on youth policies, digitalisation and rights of persons with disabilities.

Daiva Brogienė
Dr Daiva Brogienė works as a gynecologist-obstetrician at Vilnius Maternity Hospital but also as a lecturer at Vilnius University. She graduated from the Vilnius University Faculty of Medicine in 1981 and from the Vilnius University Faculty of Law in 2003. In 2010, she defended her thesis in biomedical science on “Patient’s rights to quality in health care and health damage compensation” for a public health doctorate degree.

Ana Castellanos
Ana Castellanos currently works as a project manager for the Plataforma de Organizaciones de Pacientes (Spanish Patients’ Platform). She holds a Master of Science (MSc.) degree in Business Administration with a major in international marketing from Jönköping University (Sweden). She has more than 15 years of experience in project management, consultancy, marketing and communications in fields ranging from agriculture, food, culture, environment, or tourism to health.

Alina Constantin
Alina Constantin is a patient advocate for people living with obesity, member of the Ligue contre l'obésité, a nationwide organization which regroups various players in the field of obesity: medical, scientific and research professionals, patient organizations. She is a member of the patients’ council and coordinates international collaborations with European and world organizations.

Pierre Delsaux
Pierre Delsaux is Deputy Director General at the European Commission, Directorate General for Health (DG SANTE) since 01/12/2020. After studying Law at the University of Liège, he obtained his Master of Law at the Northwestern University, Chicago. He was Legal Secretary at the European Court of Justice. He worked in the private sector before joining the European Commission in 1991. He started his career within the European Commission in the Directorate General for Competition.

Paul De Raeve
Paul De Raeve has been a registered nurse since 1984. He obtained a master’s degree in nursing science at the Free University of Brussels, a Master degree in Statistics from the Catholic University of Brussels, and a PhD degree from the Kings College University of London. Paul holds an Adjunct Professorship at the John Hopkins University in Baltimore (US) since 2018. On Work experience, Paul was appointed as staff manager at the Free University hospital of Brussels, part-time delegated to the Belgium Ministry of Health and Environment.

Roberto Faccincani
Roberto Faccincani is the Chairman of the Advisory Council (Executive Board member) of the Disaster and Military Surgery Section of ESTES (European Society for Trauma and Emergency Surgery), Member of the Board of SICUT (Italian Society for Trauma and Urgency Surgery) and Member of the Board of FIMEUC (Italian Federation for Emergency and Urgency Medicine and Catastrophes). He is also an Adjunct professor at School of Medicine and School of Nursing, Vita e Salute San Raffaele University. He worked also in remote zones and difficult environment as India, Syria, Armenia, etc.

Alex Filicevas
Alex Filicevas is the Executive Director of the World Bladder Cancer Patient Coalition (WBCPC), where he leads the work of the organisation to foster an international community of strong bladder cancer patient advocates. Alex also serves as the President of the All.Can International – an organisation focused on reducing in efficiency in cancer worldwide whilst focusing on what matters to patients.

Pascal Garel
Pascal Garel is since September 2005 Chief Executive of HOPE, the European Hospital and Healthcare Federation. Mr. Garel has been actively involved in mechanisms of decision in the hospital sector on various issues including research, hospital management, quality and patient safety development for more than twenty years, at hospital level, in national, European and international contexts.

Antonio Gaudioso
Antonio graduated in Political Science and is the President of Cittadinanzattiva. He has been working for 20 years to promote and protect the rights of citizens and consumers, in Italy and in Europe. He took part to the drafting of the European Charter of Patients’ Rights and he is engaged in the process of adoption of the first law about pain. He is Vice President of the Health City Institute, member of the foundation for the personalized medicine, he is a spokesperson of the scientific technical committee about vaccines of ECDC (European Centre for disease prevention and control).

Dorejd Kastrati
Dr. Dorejd Kastrati received his medical degree in 2004 from the University of Heidelberg, Germany. He completed his doctoral thesis in the field of oncology and holds an MBA from INSEAD, France. Dorejd has been working in the pharmaceutical industry since 2005 when he joined Novartis Pharma. Among multiple positions in commercial functions, Dorejd led the German marketing team for the transplantation portfolio and several primary care sales teams.

Brian Maguire
Brussels-based journalist, producer, broadcaster, and events moderator, Brian Maguire, hosts live radio and television debates with European Commissioners, Ambassadors, Members of the European Parliament and independent experts. A EURONEWS and Irish television contributor, he also presents the EURACTIV digital technology series ‘The Presidency’ and the political interview series ‘Over A Coffee’.

Neda Milevska-Kostova
Prim Dr Neda Milevska-Kostova is a Vice-chair of the Governing Board of the International Alliance of Patients Organisations (IAPO), UK, an umbrella in official relations with the WHO, representing 300 patient organisations inover 70 countries. Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. She has over 20 years experience in health research, policy and patient advocacy.

Lobna Salem
Dr Lobna Salem, MD is the Regional Chief Medical Officer for Developed Markets at Viatris. She was a senior executive at Pfizer with more than 25 years of experience in bio pharmaceutical industry working across different cultures with experience spanning across global, region, and country experience. In addition, Lobna has held different cross-functional roles in medical affairs, clinical development, regulatory interactions and commercial functions.

Paola Testori Coggi
Paola Testori Coggi is Special Advisor of the National Technological Cluster on Life Sciences Alisei. Under the current Italian Presidency of the G20, she is Chair of the T20 Task Force on Global health and Covid-19. She is Member of the Italian Delegation to Horizon Europe-Cluster Health Programme Committee. She has done her career within the European Commission where she has been Director General for Health and Consumer until 2014.

MEP Tomislav Sokol
Tomislav Sokol was born in Zagreb in 1982. He obtained his first degree in law at the Faculty of Law, University of Zagreb, in 2006, magna cum laude. He then obtained a Masters of Law (LL.M.) specialising in European Union Law at the Katholieke Universiteit Leuven (KUL), Belgium, in 2009, magna cum laude. He defended his PhD at KUL, dealing with free movement of cross-border health care services in the EU and its impact on national health insurance systems in 2014.

Erick Tyssier
Erick Tyssier has more than 15 years of experience in healthcare & life science policy and corporate advocacy, leading public affairs missions in the healthcare sector. He joined TEVA in 2013, to establish the European Government Affairs function handling Teva’s relationships with the EU institutions and coordinating policy and advocacy at national level. Previously he worked at Sanofi in several commercial related positions in Asia and in France before moving to Brussels in 2005.

Stefania Vallone
Stefania Vallone is currently a Member of the Board of WALCE (Women Against Lung Cancer in Europe), a lung cancer patient organization based in Italy with a wide network in Europe and she is the past President of LuCE (Lung Cancer Europe), a European umbrella Organization for Lung Cancer founded in 2013 and based in Switzerland. During these 14 years of experience in this area, she has been part of several Committees and Advisory Boards in Italy and Europe with the aim to improve patient education and engagement and patient support, access to diagnostics and care and in general the quality of life of people who live with lung cancer.

Mariano Votta
Director of Active Citizenship Network and Responsible for European Affairs at Cittadinanzattiva. He has more than 10 years of experience in the field of the protection of citizens’ rights, stakeholder engagement, communication and civic information. His was the idea to encourage and promote the Member of the European Parliament Interest Group “European Patients' Rights & Cross-Border Healthcare” at the European Parliament during 2015.

A VIDEO MESSAGE FOR THE LEADERS INVOLVED IN THE GLOBAL HEALTH SUMMIT
As part of the 15th European Patients’ Rights Day, Active Citizenship Network - the European branch of Cittadinanzattiva - collected in a video the opinions of some representatives of the institutions, civil society and the scientific community, with the aim of launching a concrete message to the decision makers who took part in the Global Health Summit, held in Rome on May 21st, during the Italian Presidency of the G20.
The Summit was an opportunity to share the lessons learned from the pandemic and to define a common commitment to building a healthier, safer and more sustainable world. Global leaders and high-level experts discussed how to improve health security, strengthen our health systems and strengthen Europe's capacity to deal with future crises in a spirit of solidarity. In this context, Active Citizenship Network has also published a Manifesto with 10 recommendations addressed to institutions and signed by 50 associations from 18 countries, to underline the unmet needs of non-Covid patients. To see the video, click here. To read the press release, click here

EUROPEAN PATIENTS’ RIGHTS DAY 2021: INITIATIVES ACROSS EUROPE
Below are listed some examples of all the initiatives organized all around Europe. The European Patients’ Rights Day has become a regular appointment to improve patients’ rights in Europe and in each Member State. If you wish to add an event dedicated to the celebration of the European Patients’ Rights Day in your country, please write to: d.quaggia@activecitizenship.net.

At European Level
European Patients Forum Read more
All.Can International Read more

At National level

BELGIUM
Droits Quotidiens Read more

BULGARIA
DNews.bg Read more (BG)

CROATIA
International Council of The Patient Ombudsman © Read more (HR)
Teaching Institute for Public Health "Dr. Andrija Štampar " Read more (HR)
Association for Patients’Rights Zadarski Read more 1-2-3 (HR)
Ordinacija Read more (HR)
Ivan Domac School of Economics and Commerce Vinkovci Read more (HR)
Hrvatsky Radio Vukovar Read more (HR)
HRT Magazine Read more (HR)

CYPRUS
Cyprus Times Read more
Universal Patients’Rights Association, Read more

FRANCE
France Assos Santé Read more 1-2-3-4 (FR)
AMADYS association de personnes atteintes de dystonie Read more (FR)
France Assos Santé Centre-Val de Loire Read more (FR)
France Assos Santé Normandie Read more (FR)
A gence régionale de santé de Normandie Read more (FR)
Cancer Contribution Read more (FR)
HAD Saint Sauveur Read more (FR)
Pharmacie Meysen Read more (FR)
Centre Hospitalier Regional Universitaire CHRU Read more (FR)
L’Union de syndicats de pharmaciens d’officine – USPO Read more (FR)
Le Centre Hospitalier D'Embrun Read more (FR)
La Veille des acteurs de la Santé Read more (FR)
Centre Henri-Becquerel Read more (FR)
La ligue contre le cancer – Gironde Read more (FR)
Groupe de Santé CLINIFUTUR Read more (FR)

GREECE
Hellenic Patients' Association Read more - 2 -
National Confederation of People with Disabilities Read more (GR)
Hellenic Anti-Rheumatic Luggle Association (EL.EANA) Read more
Lefkada Hospital Read more
The Panhellenic Federation of People with Multiple Sclerosis (POAMSKP) Read more
The Federation of Patients 'Associations (OSAK) Read more - 2

ITALY
Cittadinanzattiva Video on the European Charter of Patients’ Rights
Cittadinanzattiva Umbria Read more (IT)

LITHUANIA
Jurbarkas District Municipality Public Health Bureau, Read more
Femmes pour toujours, Read more

MALTA
Malta Health Network (MHN) Read more (EN) 1, 2, 3

POLAND
The Institute of Patient Rights and Health Education, Read more (PL)
Hematoonkologia, Read more (PL)
Infowire, Read more (PL)

PORTUGAL
Portugal celebrates 15 years of the European Patients' Rights Day
The new Europe's Beating Cancer Plan, 2021-2024, has a primary objective where preventionis the greatest gain in health. According to Portuguese MEP Sara Cerdas, it is necessary to act on the known causes of cancer and in all the forms already determined by science as responsible for the development of the disease.The European Union aims to eradicate bad living habits and promote healthy and sustainable diets, as well as the adoption of other habits with a focus on environmental agents, which promote quality of life at all stages of the disease. This theme is the pillar of the celebration of the 15th anniversary of the European Patients 'Rights Day in Portugal, organized by AESEP (Associação Europeia de Saúde Educativa e Preventiva em Epigenética) and supported also by Active Citizenship Network. Read and listen the contribution of Mariano Votta, Director of ACN.

Press review:

• DIÁRIO DE COIMBRA (18 Apr. 2021): Fórum Europeu discute prevenção do cancro em tempo de pandemia (PT)

• ASSOCIAÇÃO EUROPEIA DE SAÚDE EDUCATIVA E PREVENTIVA EM EPIGENÉTICA (18 Apr 2021): 3º Fórum Anual Europeu de Saúde Preventiva e Epigenética (PT)

• SERVIÇO DE SAÚDE DA RAM (18 Apr. 2021): Dia Europeu dos Direitos dos Doentes (PT)

• OBSERVADOR (18 Apr 2021): Direitos dos doentes oncológicos (PT)

• INSTITUTO NACIONAL PARA A REABILITAÇÃO (18 Apr. 2021): Dia Europeu dos Direitos dos Doentes (PT)

• ESCOLA SUPERIOR DE SAÚDE DE SANTA MARIA (18 Apr. 2021): Dia Europeu dos Direitos dos Doentes (PT)

• CORREIO DOS AÇORES (17 Apr 2021): Dia Europeu dos Direitos dos Doentes celebra -se amanhã assinalado com programa em Ponta Delgada (PT)

• AÇORIANO ORIENTAL (17 Apr. 2021): Mas Saúde – respeitando os Direitos dos Doentes (PT)

• SAPO-LIFESTYLE (16 Apr. 2021): COVID-19: Fórum Europeu vai discutir a prevenção do cancro em tempo de pandemia (PT)

• NOTÍCIAS AO MINUTO (16 Apr. 2021): Fórum Europeu vai discutir a prevenção do cancro em tempo de pandemia (PT)

• CANAL S+ (16 Apr 2021): Covid-19: Fórum Europeu vai discutir a prevenção do cancro em tempo de pandemia (PT)

• MUNICIPIO DE LEIRIA (16 Apr. 2021): Fórum Europeu de Saúde e Epigenética | “Dia Europeu dos direitos dos Doentes” (PT)

• RADIO REGIONAL DO CENTRO (16 Apr 2021): Dia Europeu dos Direitos dos Doentes (PT)

OTHER INITIATIVES IN PORTUGAL
Núcleo de Estudos de Bioética da Sociedade Portuguesa de Medicina Interna, Read more (PT), 1
CESPU, Read more (PT)
Ordem enfermeiros Madeira, Read more (PT)
Serviço de Saúde da RAM, Read more (PT)
Sagrado Coração de Jesus recorded a video (PT)
Técnicos de Medicina Nuclear, de Radiologia e de Radioterapia, Read more (PT)

SLOVAKIA
Association for the Protection of Patients' Rights of the Slovak Republic - AOPP, Read more (SK)
Commissioner Stavrovska's office, Read more (SK)

SLOVENIA
Alzheimer Slovenia, Read more (SI)

SPAIN
La Plataforma de Organizaciones de Pacientes, Read more (ES)
Somos Pacientes, Read more (ES)
Salud Castilla y Leon, Read more (ES)
Observatorio Nacional de Enfermedades Raras Oculares (ONERO), Read more (ES)
Colegio Oficial de la Psicología de Castilla-La Mancha, Read more (ES)
Escuela de Salud Castilla la Mancha, Read more (ES)
Mejorconsalud, Read more (ES)
blogs.publico, Read more (ES)
Somosdisca,Read more (ES)
TelefarmaciaApp, Read more (ES)
Administración de Justicia en Euskadi, Read more (ES)
Federación Española de Enfermedades Neuromusculares (Federación ASEM), Read more (ES)
Clínica Activa Mutua, Read more (ES)
Enfermeria Malaga, Read more (ES)

Extra EU

Republic of MOLDOVA
Primariaselemet, Read more (MD)
Ministerul Sănătății, Muncii și Protecției Sociale (MSMPS), Agenția Națională pentru Sănătate Publică (ANSP), Read more (MD)
Oficiul Avocatului Poporului-Ombudsman, Read more (MD)

Video messages and statements in support of the XV European Patients’ Rights Day
In the age of COVID-19, the European Patients’ Rights Day (EPRD) on the 18th of April 2021 represented an opportunity to send messages of hope and commitment, from different healthcare stakeholders partners of ACN, on the protection of the health of European citizens. Listed below you can find the video messages received.

MEP Piernicola Pedicini (Italy), Greens/EFA

MEP Tomislav Sokol (Croatia), EPP

Shaantanu Donde
Head – Portfolio Management (Developed Markets & JANZ), Medical Affairs - Viatris

Maria Teresa Flor de Lima
Founder - Associação de Doentes de Dor Crónica dos Açores (ADDCA)
(Portugal)

Ilaria Giannico
Secretary General - European Union of Private Hospitals (UEHP)

Jo Maes
Chairman - European Patients Empowerment for Customised Solutions (EPECS)

Anna Lisa Mandorino
Secretary General - Cittadinanzattiva

Jordi Moya Riera
President - Sine Dolore European Pain Foundation (Spain)

Arlinda Shehu
Program Manager - Organisation "Together for Life" (Albania)

This is the video made by our Italian activists from the Tribunal for Patients’ Rights on the European Charter of Patients’ Rights, promoted by Cittadinanzattiva in 2012, for a European Union built on common citizens' rights.

Maria Teresa Flor de Lima
Founder and President – European Association for Educational and Preventive Health in Epigenetics (AESEP)
(Portugal)

Casa de Saúde Rainha Santa Isabel - CSRSI
(Portugal)

17 June 2021, Online event - The right to avoid unnecessary pain in EU during the Covid-19 Pandemic
In the framework of the cycle of Eu Webinars «Health at the heart of the future of Europe», that ACN will hold to feed the debate of the Conference for the Future of Europe, we will realize an event focused on Pain. It will be also the occasion to celebrate the Award Ceremony of the European Civic Prize on Chronic Pain Collecting Good Practices - III edition 2020-2021. For more information please click here, for the registration, click here.

The conference has been realized thanks to the unconditional support of:

Media Partners: