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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 10th, number 103 - June 2022

SPECIAL EDITION ON THE EUROPEAN CELEBRATION OF THE EUROPEAN PATIENTS’ RIGHTS DAY 2022

Watch the Stella Kyriakides, EU Commissioner for Health and Food Safety video message

Highlight

European Patients’ Rights Day: championing civic participation in health
Mariano Votta, Director of Active Citizenship Network, the association promoting the European Patients’ Rights Day since 2007, explores the importance of civic engagement in safeguarding the future of European citizens’ health. To read the article published on Health Europa, media partner of Active Citizenship Network, click here.

Focus

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 role played by key actors in the decision-making process on health priorities. In particular, just before the end of the Conference on the future of Europe, the expectations and requests of citizens and Patients Advocacy Groups (PAGs) addressed to the institutions have been analysed. The first day of the 2022 conference was dedicated to the presentation to the EU Institutions of the outputs of the themes that emerged from health-related initiatives organized in the framework of the Conference on the Future of Europe. During the second day the discussion focused on analysing the actual level of citizen involvement by the Member States close to the approval by the European Commission of most of the NRRPs and their implementation at national level. 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

Vytenis AndriukaitisBoris Azaïs
Boris Azaïs is currently Director, Public Policy Europe & Canada for MSD (a subsidiary of Merck & Co., Inc., Kenilworth, N.J., USA ). In this capacity, he engages with European institutions and governments to promote a policy framework that supports pharmaceutical innovation for European patients. His core interest is at the crossroads of science, healthcare and industrial policies.


Vytenis AndriukaitisBrando Benifei
Brando Benifei is an Italian Member of the European Parliament from La Spezia serving his second term and is the Head of Delegation of Partito Democratico in the European parliament. He is member of the Special Committee on Artificial Intelligence in a Digital Age and the Committee on Internal Market and Consumer Protection (IMCO).

Vytenis AndriukaitisLaura Cande
Laura is Policy and Projects Consultant at EHMA, where she coordinates the work of the Scientific Advisory Committee, the Annual Conference Committee, and the Conference Rapporteurs Programme; as well as projects on vaccine uptake, health management digital skills, and process improvement.

Vytenis AndriukaitisFrancesca Colombo
Francesca Colombo, M.Sc., is Head of the Health Division at the Organisation for Economic Co-operation and Development. She oversees OECD work on health, which aims at providing internationally comparable data on health systems and applying economic analysis to health policies, advising policy makers, stakeholders and citizens on how to respond to demands for more and better health care and make health systems more people centred.

Vytenis AndriukaitisGisèle Diallo
Gisèle Diallo is a policy officer in the Ministry of solidarities and health, specifically in charge of the European issues regarding social security and social protection. Previously, she worked more specifically on the national pensions issues and the accidents at work and occupational diseases French system. She is one of the French delegates in the Social Protection Committee, attached to the European Commission.

Vytenis AndriukaitisPaul Garassus
Paul Garassus (Neurologist, MD) is President of the UEHP, Vice President of SFES (French Health Economics Society) and President of the Scientific Council of BAQIMEHP (BAQIMEHP professional formation and analysis for the private sector of French hospitalisation) represents Private Sector at European level since 2008.

Vytenis AndriukaitisMiriam Gargesi
Miriam Gargesi leads Illumina Government Affairs activities in Europe, Middle East and Africa. Miriam has longstanding experience in government affairs at pan-European and country-level, spanning across pharmaceuticals and medical devices alike. Prior to joining Illumina, she worked as Associate Director Government Affairs EMEA at Gilead Sciences.

Vytenis AndriukaitisAntonio Gaudioso
Antonio Gaudioso graduated in Political Science and has been working for 20 years to promote and protect the rights of citizens and consumers in Italy and in Europe, thanks to his work within Cittadinanzattiva, where he worked until he was appointed Head of the Technical Secretariat of the Italian Minister of Health in November 2021.

Vytenis AndriukaitisGiovanni Gorgoni
Giovanni Gorgoni is the chairman of EUREGHA (European Regional and Local Health Authorities, treasurer of EuroHealthNet (health promotion and health inequalities) and member of the executive board of EHTEL (eHealth and telemedicine), vice president of italian network NISAN (health clinical costing) and professor of Public Management at Bari LUM University.

Vytenis AndriukaitisIgor Grzesiak Członek Zarządu
Igor Grzesiak Członek Zarządu is the Vice president of the Polish Institute for Patients’ Rights and Health Education. He completed his post-graduate studies in Project Management at the Faculty of Management of the University of Warsaw. Coordinator of many social actions in the field of prevention of civilization diseases.

Vytenis AndriukaitisChristiaan Keijzer
Christiaan Keijzer is the President of the Standing Committee of European Doctors (CPME), Chair of the central educational board at the Radboud University Medical Center Nijmegen, Board member, vice-president and financial officer of the Royal Dutch Medical association (KNMG) and Member of the Healthcare Professionals Working Party (HCPWP) of the European Medicines Agency (EMA), Vice-president of the European federation of salaried doctors (FEMS) and Member of the regional medical disciplinary boards in the Netherlands.

Vytenis AndriukaitisStella Kyriakides
Stella Kyriakides is the European Commissioner for Health and Food Safety. She has been leading the Commission’s work to coordinate the EU’s health response to COVID-19. She is responsible for the establishment of a strong European Health Union and Europe’s Beating Cancer Plan. She is leading the new ‘Farm to Fork’ strategy for sustainable food. Her responsibilities include enforcing EU food, animal welfare, animal and plant health laws.

Vytenis AndriukaitisMarc Lange
Marc Lange is the Secretary General of the European eHealth Stakeholder Platform (EHTEL). EHTEL is the leading collaboration platform for decision makers and implementers in Europe, engaged in supporting the transformation of the health and care practice in Europe through digital health. The association brings together under one roof a wide range of constituencies crucial for the betterment of health and social care with digital health.

Vytenis AndriukaitisBrian Maguire
Brussels and Washington-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, as well as United States politicians and business representatives.

Vytenis AndriukaitisAnna Lisa Mandorino
Anna Lisa Mandorino is General Secretary of Cittadinanzattiva. Graduated in classical literature, she specialized in European Public Relations and Corporate Social Responsibility. In Cittadinanzattiva she first dealt with Communication, then with the General Management through the coordination of activities and projects for the promotion of civic activism and participation.

Vytenis AndriukaitisMauro Marè
Mauro Marè is Full Professor of Public Economics at Viterbo’s Tuscia Univerity and Full Professor of Public Economics at Rome’s LUISS University. He has been personal advisor of the past three mandates of Ministry of Finance, member of the supervisory board of the Human Technopole Foundation in Milan, Head (and member) of the Italian delegation in some OECD and EU working groups such as: the Network on Fiscal Relation of the OECD (Vice Chairman).


Vytenis AndriukaitisVictor Mendonça
Victor Lino Mendonça is the Head of Corporate Affairs for Viatris in Europe and Board member of Medicines for Europe. Formerly, he was leading the Health Economics department at Medicines for Europe. He was also Advisor to the Executive Board of INFARMED for almost 8 years and prior to this, was the Advisor to the Health Secretary of State to the Ministry of Health in Portugal.

Vytenis AndriukaitisIlaria Passarani
Ilaria Passarani is the Secretary General of PGEU, the organization representing European community pharmacists. She provides strategic direction and leadership to the organization while managing the day-to-day operations of PGEU, its ongoing relationships with member associations and other stakeholders, as well as representing the pharmacy sector in various European fora.

Vytenis AndriukaitisGábor Pogány
Dr. Gábor Pogány holds a Ph.D. in Biochemistry. His middle daughter is affected with Williams Syndrome (WS). In cooperation with others, Gábor established the Hungarian Williams Syndrome Association (HWSA) in 1998, then initiated the foundation of the European Federation of Williams Syndrome Association (FEWS) as well as the Hungarian Rare Diseases Federation (HUFERDIS), or recently the Hungarian Alliance of Patient Organizations (HAPO) and National Patient Forum.

Vytenis AndriukaitisJohn F. Ryan
John F. Ryan is Director of the European Commission Public Health directorate since September 2016 and acting Deputy Director-General for Health since December 2021. He is currently the Commission representative on the Board of the European Centre for Disease Prevention and Control.

Vytenis AndriukaitisTomislav 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.

Vytenis AndriukaitisDavid Somekh
Dr David Somekh. was a forensic psychiatrist, psychoanalyst and experienced clinician in management for many years who retired from the UK NHS fifteen years ago. He has been involved in healthcare quality since 1988. He was a member of the Executive of the European Society for Quality in Healthcare from 1998-2015, and was President 2005-7.

Vytenis AndriukaitisErick 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, as well as Teva Europe ESG agenda.

Vytenis AndriukaitisMariano Votta
Mariano Votta is responsible for EU Affairs of the Italian NGO Cittadinanzattiva and the Director of its EU branch called “Active Citizenship Network” (ACN). Mariano has over 20 years of experience in advocacy, stakeholder engagement, European projects, communication, and civic information.

Press review & publications

ADVANCES IN HEALTH AND BEHAVIOR (Published date: 30 May 2022): Isolated but not alone: the response to the pandemic in the story of PAGs from the Italian case history to the Global Health Summit "Rome Declaration"

FEDERFARMA.IT (23th April 2022): Diritti del malato, ancora poca partecipazione dei cittadini. I dati della rete europea di Cittadinanzattiva (IT language)

VITA (22th April 2022): Salute pubblica e Pnrr, la società civile resta una voce non coinvolta (IT language)

INSALUTENEWS.IT (21st April 2022): Giornata Europea dei diritti del malato, Cittadinanzattiva: “Da PNRR ancora poca partecipazione dei cittadini nella definizione delle priorità di salute” (IT language)

HUFFPOST (19th April 2022): Diritti del malato: le priorità da cogliere, anche con il PNRR (IT language)

FuturEU (18th April 2022): 16th European Patients’ Rights Day

VIVEREPIUSANI.IT (15th April 2022): 20-21 aprile Giornata europea dei diritti del malato. Perché si celebra? (IT language)

HEALTH EUROPA (13th April 2022): European Patients’ Rights Day: Championing civic participation in health

SISTEMA.PUGLIA.IT (11th April 2022): 20-21 aprile: XVI edizione della Giornata europea dei diritti del malato (IT language)

INTERNATIONAL JOURNAL OF EPIDEMIOLOGY AND PUBLIC HEALTH RESEARCH (Published on 11 April 2022): Encouraging Across Europe the Civic & Patient Advocacy Groups’ Engagement in The Implementation of National Resilience and Recovery Plans to Reduce the Burden of Covid-19 Pandemic on NCDs Patients’ Therapeutic Adherence

CLINICAL CARDIOLOGY UPDATES (Published on 25 January 2022): Prevention and Care of Cardiovascular Diseases during the Covid-19 Pandemic: Will the National Resilience and Recovery Plans help in reducing its burden?

CLINICAL RESEARCH AND CLINICAL TRIALS (Published on 10 January 2022): The National Recovery & Resilience Plans According to Citizens’ Perspective: From the Italian Case History to the XVI European Patients’ Rights Day

FuturEU (2nd November 2021): "Addressing the challenges of concomitant deployment of COVID-19 and influenza vaccination"

FuturEU (19th July 2021): Routine vaccinations in time of covid-19 across Europe: a multi-stakeholder evaluation

FuturEU (16th July 2021): Promoting civic information to better address the collateral damage of COVID-19 on cardiovascular disease across Europe

FuturEU (27th May 2021): Patients’ right to avoid pain: reducing the burden of COVID-19, promoting best practices across EU

 

News
Patients' Rights

EUROPEAN PATIENTS’ RIGHTS DAY 2022: INITIATIVES ACROSS EUROPE
The European Patients’ Rights Day has become a regular appointment to improve patients’ rights in Europe and in each Member State. Below are listed some examples of all the initiatives organized all around Europe.

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

ETHEL
International Council of The Patient Ombudsman
European Paediatric Translational Research Infrastructure (EPTRI)

At National level

BELGIUM
Vlaamspatientenplatform
East Limburg Hospital
AZ Sint Maarten
Zorgnet-Icuro vzw - umbrella organization of the Flemish general hospitals
Patient Empowerment

BULGARIA
Pro News Dobrich
peshteraprim
e-zdravey

CROATIA
Croatian Association for the Promotion of Patients' Rights and here
Association for the Protection and Promotion of Patients' Rights "Paziente di Zara"
Institute of Public Health 
Performances in Sarajevo in Banja Luka and here and here

CYPRUS
Universal Patient Rights Association
Ygeiawatch
Federation of Patients' Associations of Cyprus and here

FRANCE
Assos-sante + all organised events HERE
Hospices Civils de Lyon
Hôpital Européen
HAD Saint-Sauveur
Les hôpitaux d’Avranches, Granville, Saint-James, Mortain et Saint-Hilaire-du-Harcouët
Synpharm
Unité Jolimont asbl
Centre Hospitalier Alpes-Isère
les Cliniques Mutualistes du Médoc et de Pessac
Grenoble-em
Toute la veille acteurs sante

GREECE
Patients' Association of Greece
President of the Republic Katerina Sakellaropoulou Message

Panhellenic Federation of People with Multiple Sclerosis
News for Health
Directorate of Public Health and Social Welfare of the Peloponnese Region
ESAMEA
Hellenic Anti-Rheumatism Society (EL. E. AN. A.)
Cancer Guidance Center (K3)
TrikalaKids
HuffPost.gr
Arcadian Radio Television

ITALY
Cittadinanzattiva Emilia-Romagna

MALTA
Malta Health Network

NETHERLANDS
Sint Trudo Hospital
ADHOC ZORGT

POLAND
The Institute of Patient Rights and Health Education
Oncologia-Dzieciięca.pl
Ombudsman for Patients' Rights and the University Clinical Center in Gdańsk
SP ZOZ MSWiA - Stettino
Faculty of Law and Administration of UMCS
Poraj commune

PORTUGAL

18 April 2022: 16th European Patients’ Rights Day & national celebration in Portugal
The European Association for Educational and Preventive Health in Epigenetics (AESEP), an official partner of Active Citizenship Network, and a supporter of the European Parliament Interest Group on Patients' Rights and Cross-border Healthcare, promoted the celebration of the XVI European Patients' Rights Day at the national level in Portugal, together with the Chronic Pain Association of the Azores, also an official ACN partner. For the occasion, the Director of Active Citizenship Network has been invited in the panel. The national celebration of the 2022 European Patients’ Rights Day took place on the 18th of April in a virtual format. Each year the theme is adapted to the emerging needs of the public health scenario of the country. This year, AESEP focused on “Women's Health - The Future of Health in Europe - Innovating in Prevention and Well-Being”. The program covered ten different themes, where women's health must be considered, respected, and protected. To know more, click here

19 April 2022: 16th European Patients’ Rights Day & local celebration in Azores Islands
Active Citizenship Network’s Portuguese historical partner Associação de Doentes de Dor Crónica dos Açores (Chronic Pain Association of the Azores) celebrated the European Patients’ Rights Day 2022 at the local level in the Azores Islands. The theme chosen was "Mental Health as Prevention of Suffering in Chronic Diseases: strategies and testimonies" and, for the occasion, invited the Patients Association Força 3P from Oporto to the online webinar, which will take place on the 19th of April at 18:00 AZOT.

Associação Europeia de Saúde Educativa e Preventiva em Epigenética Aesep and here
SOCIEDADE PORTUGUESA DE ESCLEROSE MÚLTIPLA
Conselho de Enfermagem Regional
Instituto Nacional de Emergência Médica (INEM)
Escola Superior de Saúde de Santa Maria
Hospital de Santo Espírito da Ilha Terceira, EPER
Irmãs Hospitaleiras
Unidade de Hospitalização Domiciliária do Centro Hospitalar Gaia/Espinho
Publico
ARS Alentejo
Multinews
saudeonline

ROMANIA
Healthy Living: Reducing the Burden of Noncommunicable Diseases project

SLOVAKIA
NO Cancer Alliance
Association for the Protection of Patients' Rights of the Slovak Republic - AOPP

SPAIN
Foro Espanol de Pacientes
Official College of Psychology of Castilla-La Mancha
Ixalud
EnFamiliaAEP
Celiacos.org
Consalud
Democratic Union of Pensioners and Retirees of Spain- UDP
Istituto Espanol de Formadores en Salud
Patient Platform (POP) and here
Alt Penedès-Garraf Health Consortium

SWEDEN
19-21 April 2022: 16th European Patients’ Rights Day & national celebration in Sweden
The Swedish patients’ association FOKUS Patient, which is an official partner of Active Citizenship Network, organized three digital seminars from 19 to 21 April at lunchtime, from 12:00 to 13:00 CEST, dedicated to the right to information and the right to consent, which are Articles 3 and 4 of the European Charter of Patient’s Rights, drafted by Active Citizenship Network in 2002. The aim of the seminars was to address the relationship between access to information and patients’ rights in a Swedish context. To know more on the seminars, please click here (SE language).

Extra EU

KOSOVO
Association for Patients 'Rights in Kosovo (PRAK)

Video messages in support of the XVI European Patients’ Rights Day
As already done at the occasion of the previous editions of EPRD in 2020 & 2021, also this year Active Citizenship Network celebrated the European Patients' Rights Day with messages from some of the ACN’s partners that, along the years, have supported the constant commitment in favor of the patients.
Now more than ever, in this time of health and humanitarian crisis, the celebration of the European Patients’ Rights Day has been an opportunity to send a message of hope and commitment on protecting citizens' health and well-being.
Listed below you can find the video messages received.

Joe Farrington-Douglas, Network Director - The Heart Failure Policy Network (EU)
Arnaud Faucon, Indecosa-CGT Secretary, Health Manager (France)
Penka Georgieva, Patients’ Organization With You (Bulgaria)
Ilaria Giannico, Secretary General - European Union of Private Hospitals (UEHP)
Igor Grzesiak, Institute of Patients’ Rights and Health Education (Poland)
Penilla Gunther, FOKUS Patient (Sweden)
Emete İmge, Universal Patients' Rights Association (Cyprus)
Marios Kouloumas, Cyprus Federation of Patients’ Associations (Cyprus)
Ivone Machado, St Michael and Sta Maria Diabetic patients Association (Portugal)
Jo Maes, Chairman of EPECS (The Netherlands)
Henry Mamo (10yrs old) representing Maltese Patients, Malta Health Network (Malta)
Elena Moya - Asociación Española contra la Meningitis (Spain)
Eduardo Pisani, Chief Executive Officer - All.Can International asbl
Paola Testori Coggi, Former Director General for Health - European Commission

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

       

Media Partners:

   

Events

4th July 2022 from 16.30 to 18.30 CEST - National training seminar on Antimicrobial Resistance (AMR)
Active Citizenship Network is glad to invite you on 4 July 2022, from 16:30 to 18:30 CEST to a training seminar on Antimicrobial Resistance targeted to the Italian leaders of civic and patient associations. For this reason, the seminar will be held only in Italian language, without any translation.
The event is realized in the framework of the EU project AMR Patient Alliance – developing educational repository for patient and caregiver awareness of drug resistant infections promoted by IAPO P4PS Observatory and of which Cittadinanzattiva is a part through its European branch Active Citizenship Network. It will consist of a training seminar on the topic of antimicrobial resistance. The main objective is to combat disinformation on the abuse of antibiotics, which represents one of the main global health threats according to WHO; to emphasize the necessity of a good doctor-patient relationship for an appropriate use of antibiotics; to discuss about the new National Plan to Combat Antimicrobial Resistance (PNCAR) which is being drafted in Italy; to increase the empowerment and awareness of citizens and patients on the phenomenon of antimicrobial resistance in order to preserve the effectiveness of antibiotics for as long as possible for future generations. To register, please 
click here (registration is free but mandatory). To know more, visit the programme (IT language), the webpage of the AMR Patient Alliance project and our commitment on the topic of antimicrobial resistance (AMR)

7th July 2022 from 14.30 to 16.00 CEST - EU WebinarTowards the next Council conclusions: which role of adult vaccination?
As a follow up to the Annual Meeting of the Coalition for Vaccination, and at the beginning of the Czech Semester, Active Citizenship Network is organizing a multi-stakeholder online event, valuable also to share opinions, experiences and political views on the EU Institutions' commitment to Adult Vaccination. The event is hosted by the MEPs Interest Group "European Patients' Rights & CrossBorder Healthcare and realized in the framework of the VaccinAction2022 EU project, focused on supporting the need for strengthening adult vaccination in Europe and – starting from the citizens’ and healthcare stakeholders’ perspective - understanding the impact of the COVID-19 pandemic and vaccination campaign on the national immunisation plans, protecting the value of the adult immunisation and its gains. ​To register, please click here. 

 


Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Bianca Ferraiolo, Maira Cardillo, Maddalena D'Urso, Ginevra Varallo
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net
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