If you are having trouble viewing this email, click here to view it in a standard browser
Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 10th, number 101 - April 2022

Join us for the XVI Edition of the European Patients’ Rights Day!

Taking part in the decision-making process on health priorities”
20 – 21 April 2022
14:30 – 16:00 CEST

Given the current situation of uncertainty, the conference will be organized in a digital format.

To virtually attend the conference, please register here (registration is mandatory).

DG Santé, MEPs, OECD, Ministry of Health from Italy and from France, with the main European umbrella organizations of healthcare professionals and key stakeholders (CPME, EHMA, EHTEL, EUREGHA, PGEU, UEHP), together with the private sector, citizen organizations & PAGs, have confirmed their participation as panelists to the XVI European Patients’ Rights Day (EPRD), organized by Active Citizenship Network (ACN) on April 20th and 21st 2022 and moderated by an EURACTIV journalist. The aim of the conference is to contribute to providing a multi-stakeholder vision for a Healthier European Union. To sum up:

- The first day will be dedicated to the main themes emerging from Citizens' Panels' recommendations & health-related initiatives (ACN has contributed with a cycle of 4 events in JuneJuly, September, December 2021), organized in the framework of the Conference on the Future of Europe.

- The second day will be focused on the health mission within the National Recovery and Resilience Plans across Member States and the role of the stakeholders in the definition of priorities & plans' implementation.

What has been discussed, what is missing, and what to expect in the framework of the Conference on the Future of Europe (CoFoE)? Why did only a small percentage of the initiatives promoted within the CoFoE concern health issues? How to ensure that the priorities defined in the context of CoFoE will be incorporated in the implementation of the National Recovery and Resilience Plans (NRRPs)? What is the level of involvement of citizens and patients’ associations in defining the implementation process of the priorities that have been identified in the health sector? The European celebration of the European Patients’ Rights Day, thanks to its traditional format of a big multi-stakeholder conference, will contribute to this discussion and will focus on the role played by key actors in the decision-making process on health priorities.

To know more:

- To know more about the XVI European Patients’ Rights Day, please click here.

- European Patients’ Rights Days, what has been done

- The commitment of the EU Institutions & the European Patients' Rights Day: 10 benefits the EU brings to patients

- International & National celebrations for the European Patients’ Rights Day


29th April 2022: The value of Adult Vaccination: EU training seminar, join us!

Active Citizenship Network (ACN), after its commitment on #VaccinAction2021, is launching its #VaccinAction2022, focused on supporting the need for strengthening adult vaccination in Europe and – starting from the citizens’ and healthcare stakeholders’ perspective - understanding the impact of COVID-19 pandemic and vaccination campaigns on the national immunization plans, protecting the value of the adult immunization and its gains. In particular, within the framework of this #VaccinAction2022 EU project, Active Citizenship Network is glad to invite you on the 29th of April 2022, from 14.30 to 16.30 CEST, to the event titled “Adult Vaccination: build the capacity and capabilities of civil society”. It will consist of a 2-hour training seminar which will be realized during the “European Immunization Week 2022”, open to leaders of civic and patient associations from different countries in order to respond to the need to be more updated and prepared to support and protect the value, in particular, of adult immunization and its related benefits to better identify, recognize and address the growing external factors that can negatively influence policy on vaccines in EU Member States and beyond, and improving the know how to recognize official sources of information and have the tools to support them. To participate in the training, please register here. To know more on the engagement of Cittadinanzattiva on vaccination, click here.

Patients' Rights

A country-level pandemic response toolkit: Enabling lessons learned”: watch the latest video released
Economist Impact, of which Active Citizenship Network is an Expert Panel member, has produced a video as a follow-up of the country-level pandemic response toolkit and report. The pandemic has reshaped the world in many ways. Now organisations, governments, international agencies and the scientific community are trying to understand what could have been done differently and what we should do to prevent this from happening again. In this framework, the video wants to act as a guided tour to support further dissemination and encourage people to use the toolkit, designed to work across a range of different countries and adaptable to suit an individual country’s needs and priorities. The video is now live on LinkedInTwitter and Facebook. To know more about the toolkit and report, please read more here.

Albania: the Report entitled “Extremely limited budget for health, Albanians pay out of pocket for almost half of the health services”
Representatives of the Albanian association Together for Life, partner of Active Citizenship Network, have spoken on World Health Day to the media about the problems of the health system in Albania, focusing on the need to increase budget allocation to the healthcare sector; increase investment in medical equipment and devices, and providing new incentives to encourage doctors and nurses to work in municipal and regional hospitals. The World Health Organization ranked Albania as the last country in Europe with the lowest public spending per capita on health. According to indirect data, COVID-19 pandemic has further exacerbated this trend, as there has been an increase in health expenditures in the household budget. To read the Report realized on these topics, please click here (Albanian language).

Networking News

Active Citizenship Network keeps growing, and not only in Europe. In this newsletter we are going to report a series of agreements formalized in this last period at international, European and national level, which testify a growing interest in our work on the one hand, and - on the other hand - our willingness to collaborate in synergy with the many actors of civil society who pursue common purposes.

Heart Failure Policy Network
Active Citizenship Network is glad to have officially signed a Memorandum of Understanding with the Heart Failure Policy Network (HFPN), an independent, multidisciplinary platform of healthcare professionals, advocacy groups and policymakers from across Europe who work together to raise awareness of unmet needs surrounding heart failure. ACN and HFPN have agreed to cooperate and support each other’s initiatives with the objective to raise awareness on the needs surrounding patient care with relation to CVDs and heart failure prevention and promote the empowerment and participation of patients in European public policies, activities, and dialogues as a key step towards a more inclusive Europe.

Malta Health Network
Active Citizenship Network has recently formalized a new partnership with Malta Health Network (MHN), an umbrella organisation which brings together health related organisations to give patients an informed voice in health-related matters in Malta, in the EU and internationally. The main objectives of the Malta Health Network are patient empowerment, patient advocacy and training, and also aims at providing an efficient platform where all members can network and achieve common goals through sharing of resources. In this framework, ACN and MHN have initiated a collaboration to protect patients’ rights and reduce health inequalities across Europe, a topic emphasized also by their support to the MEPs Interest Group “European Patients' Rights and Cross- border Healthcare”, launched in 2015 with the support of associations from all over Europe with the aim to: increase awareness regarding the importance of patients’ rights; safeguard the sustainability of healthcare systems; build an enabling environment for citizens' and patients' organizations in the European health policy; contribute to strengthen an European citizenship.

International Longevity Centre UK
Active Citizenship Network has officially signed a Memorandum of Understanding with International Longevity Centre UK (ILC), the UK’s specialist think tank on the impact of longevity on society, which aims at pioneering solutions for a society where everyone can thrive, regardless of age. In this framework, ACN and ICL welcomed the opportunity to work together at the EU level to support each other’s initiatives and projects on the topic of reduction of health inequalities, vaccination, healthy ageing, and promotion of public health as a common good. The two also agreed to join forces to cooperate with EU institutions and both private and public relevant stakeholders towards a more resilient healthcare system for a healthier European Union.

Collective Leadership Institute
Active Citizenship Network is pleased to announce that a Memorandum of Understanding has been signed with the German Collective Leadership Institute (CLI), an international non-profit organization and one of the world’s leading mission-driven organizations with the mission to scale up collaboration skills for a sustainable future. It aims at empowering people to lead collectively towards a sustainable future by building competence for sustainability. ACN and CLI agreed to work together at the EU level in order to join forces to cooperate with EU institutions towards the implementation of the new European consumer agenda. Moreover, the Collective Leadership Institute has officially endorsed the Inter-Institutional Group “SDGs for well-being and consumers’ protection” by raising awareness among consumer associations and MEPs about the activities realized by the Group in order to empower citizens and consumers in their participation in European public policies, with a particular focus to the field of SDGs.


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, is promoting 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 will take 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 will be focusing on “Women's Health - The Future of Health in Europe - Innovating in Prevention and Well-Being”. The program will cover ten different themes, where women's health must be considered, respected, and protected. To access the event, 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) will celebrate the European Patients’ Rights Day 2022 at the local level in the Azores Islands. The theme chosen is "Mental Health as Prevention of Suffering in Chronic Diseases: strategies and testimonies" and, for the occasion, it will invite the Patients Association Força 3P from Oporto to the online webinar, which will take place on the 19th of April and will start at 18:00 AZOT. To access the event, please click here.

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, will be organizing 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 is to address the relationship between access to information and patients’ rights in a Swedish context. To know more on the seminars and on how to register, please click here (SE language).

26 April 2022 (9:30-16:30 CEST): final CropBooster-P EU project meeting!
The final meeting of CropBooster-P, the Coordination and Support Action (CSA) EU project, of which Cittadinanzattiva/Active Citizenship Network is a external stakeholder, will take place on April 26th 2022 in Wageningen, the Netherlands from 9.30 to 16.30 CEST. The project, supported through the EU Horizon 2020 funding programme, started on November 1, 2018, and is about mapping and assessing current and future strategies, methods, and technologies for crop improvement. The project mainly aims at new crop varieties in current agricultural practice by aligning the development of these crops with the needs, concerns, wishes and expectations of society. To know more about the project, visit the official website.

28 April 2022: “Accesibility vs. information during lifelong vaccination”
Active Citizenship Network has been invited by the Coalition of Patients Organization with Chronic Disease from Romania (COPAC) in the panel of the online debate ”Accesibility vs. information during lifelong vaccination”, which will take place on 28 April 2022 at 15.00 Eastern European Time (GMT + 03:00). To the debate will also be participating healthcare authorities, including the Ministry of Health, National Insurance House, and the National Agency of Medicine. COPAC has started since 2018 a series of approaches to the Romanian authorities in order to compensate for vaccination for chronic patients. In this context, we would like to invite you to share your experience related to this topic from a European perspective. To know more, please click here.

28 April 2022: “Empowering civil society to address policies that constitute barriers to improving adult vaccination rates”
The International Federation of Ageing (IFA), partner of Active Citizenship Network, will be carrying out a webinar entitled “Empowering civil society to address policies that constitute barriers to improving adult vaccination rates” on 28 April 2022, from 14:00 to 15:30 CEST, to which Active Citizenship Network will participate as a discussant. The purpose of the webinar is to generate interest and understanding of barriers and solutions to improving uptake rates of adult vaccination at an individual and population-based level and by building capacity and capabilities of civil society. To register to the online event, please click here.

3 May 2022: PAE Board Meeting
Cittadinanzattiva, through its European branch Active Citizenship Network, will participate to the next Board Meeting carried out by Pain Alliance Europe on 3 May, 2022 from 15:00 - 17:00 CET to discuss priorities in the field related to the struggle of chronic pain at the EU level. To know more about Pain Alliance Europe, click here.

24 May 2022: Advanced Therapy Medicinal Products (ATMPs) revolution: empowering leaders of EU civic and patients’ advocacy groups 
Organized by Active Citizenship Network in the framework of the EU project #VITA: Value and InnovaTion of Advanced therapies, an EU training seminar will take place on May 24, 2022 from 15:00 to 17:00 CEST. The seminar will be an opportunity to highlight the fact that ATMPs are a paradigm shift for patients, public decision-makers, and healthcare systems, and to understand how to address the public budget and sustainability issues to consider ATMPs as an investment. Please register in advance for this webinar here.


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

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

Active Citizenship Network c.o. Cittadinanzattiva - Via Cereate 6 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
Representative office to the UE: Rue Philippe Le Bon, 46 - 1000 Brussels (Belgium)
Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net