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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN

Year 10th, number 100 - March 2022
Highlight

20-21 April 2022: XVI Edition of the European Patients’ Rights Day

CONFERENCE ON THE FUTURE OF A HEALTHY EUROPE
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, 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

Focus

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

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”. The training will take place in the framework of the EU #VaccinAction 2022 project and will focus on supporting the need to strengthen adult vaccination in Europe by providing concrete examples. 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:

The engagement of Cittadinanzattiva on vaccination

News
Patients' Rights

#VITA: Value and InnovaTion of Advanced therapies

In 2022 Cittadinanzattiva, through its European branch Active Citizenship Network, is engaged in an EU project to promote at the European level the importance of access to Advanced Therapy Medicinal Products (ATMPs), which development presents new opportunities for the treatment and prevention of a variety of diseases (gene diseases, oncological diseases and diseases with long prognosis) or for restoring, correcting or modifying compromised physiological functions in humans, including by correcting mutations acquired on a genetic basis. The relevance of these innovative therapies, however, places them at the centre of the discussion on health and health policy choices for the future and the sustainability of the health service. This will pose very delicate problems of choice and rationing in terms of access to treatment for patients, which could result in the treatment of fewer patients than eligible and therefore potentially treatable. A solution in terms of identifying the resources with which to finance them must therefore be tackled today so as not to arrive unprepared.
The "Italian proposal" provides for an installment of the cost of advanced therapies which at the moment are considered current expenses, but which, to be sustainable, should be considered as investments. The project will be developed through an EU training seminar, a policy dialogue with the main EU institutions, and a call to action aimed at European decision-makers to provide greater access to ATMPs.
This project will be carried out with the unconditional contribution of #VITA which includes: Celgene – Bristol-Myers Squibb, Gilead Sciences, PTC, Roche.

To know more:

- Visit the webpage of the #VITA project

- Read the article “The evaluation of the expenses for Advanced Therapies. The reasons for a new economic and accounting approach” (IT language)

AMR Patient Alliance – developing educational repository for patient and caregiver awareness of drug resistant infections
Cittadinanzattiva, through its European branch Active Citizenship Network (ACN), has become involved, together with the Spanish association ALCER, in the AMR Patient Alliance, developed by IAPO P4PS Observatory, with the aim to gather the voice of patients and involve all the relevant stakeholders around the issue of antimicrobial resistance (AMR). Patients need to play a much bigger role in the fight against antimicrobial resistance (AMR), as they are directly involved in over-prescribing, overuse and self-medication, the scale and effect of which is still unknown. In order to this global public health threat, ACN has committed to undertake three main activities: a training seminar on the topic; contribution to the development of a repository of AMR-related educational, informative, and awareness-raising materials for patient organizations, patients and caregivers; support to the course “Antimicrobial Resistance: Patient Role in Rational Use” accessible to all EU citizens and developed by IAPO P4PSO and PAIR Academy.

To know more:

- Visit the webpage of the AMR Patient Alliance project

- The commitment of Cittadinanzattiva-Active Citizenship Network on the topic of antimicrobial resistance (AMR)

Started the drafting process of the Global Health Charter: health and well-being, environment, and social justice as the key themes

The drafting process of a Global Health Charter, promoted by Cittadinanzattiva, has started and will be presented by the end of 2022. The Global Health Charter, focused on the three central themes of health and well-being, environment, and social justice, wants to be a useful tool in pursuing the goal of global health, with the aim to sanction and protect concrete and enforceable rights and commitments, both by citizens and institutions in every context and territory. The work began with a survey carried out by Cittadinanzattiva at the national (Italy) and, thanks to its EU branch Active Citizenship Network, at the European level too, which involved citizens and associations from 24 different countries to sound out their level of awareness and perception on the theme of global health and to succeed in delimiting a perimeter of macro areas in order to decline the Charter in the most effective way possible. The project is carried out with the unconditional support of Janssen Italia, the pharmaceutical company of the Johnson & Johnson Group.

To know more:

- The Global Health Charter project (ENIT)

- Read the press article (ENIT)

EU-wide Flu Alliance promoted by the Steering Group on Influenza Vaccination

To actively support work being done at Member State level, the Steering Group on Influenza Vaccination, of which Active Citizenship Network is part, is committed to bring together various different organisations in a EU-wide “Flu Alliance”, a network uniting key national stakeholders to spread messages, share best-practices and work together towards common goals. With the intense focus currently being placed on the pandemic, the Steering Group brings together policymakers, patient group representatives, clinicians, and industry representatives at the EU level to keep ensuring that other infectious diseases like influenza remain a key public health priority and to promote an increased uptake of influenza vaccination across Europe. Read more

Together for the oncology of the future”: presented in Italy the document with the involvement of 60 experts

Last 18th January 2022, Cittadinanzattiva presented the document "Together for oncology: with feet on the ground and a look into the future", with the support of Novartis and realized thanks to the contribution of about 60 experts, including representatives of institutions, of universities, of the research field, of civic and patient organizations, and of the private sector. To guide the work was also the European Plan against Cancer, built on four pillars (Prevention, Early Diagnosis, Treatment and Quality of Life) and the National Recovery and Resilience Plan (NRRP), which focuses on innovation, digital health, proximity care, social inclusion, management of chronicity. The document aims to draw a long-term strategic vision in the fight against cancer in our country, with the aim of delivering the proposals to the main decision-makers currently engaged in the construction of the new National Oncology Plan. At the center of the debate is the reflection on the Covid-19 pandemic situation and the emergency of suspended or cancelled ordinary treatments due to Covid. Among the proposals contained in the document: realizing screening and vaccines in the places closest to the citizens, implementing cancer registries in all regions, building a national portal of innovation, promoting the law on the right to oblivion. Read more.

To know more:

- Download the “Together for the oncology of the future” official document (IT language)

- Watch the event on Cittadinanzattiva’s YouTube channel (IT language)

- Visit the webpage of the Together for the oncology of the future project (IT language)



Networking News

Active Citizenship Network keeps growing, also at the extra-EU level. In this newsletter we are going to report a series of official 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 objectives in the field of vaccination, chronic pain, patients’ rights.

Confederation of Meningitis Organisations (CoMO)
Active Citizenship Network has recently formalized an official agreement with Confederation of Meningitis Organisations (CoMO), an international network of advocates working to bring together patient groups, health professionals and organisations, meningitis survivors and families from 40 countries to help reduce the incidence and impact of meningitis worldwide. ACN and CoMo have partnered together to support each other on the promotion of the protection of patients’ rights, with particular reference to weak target groups of citizens, and on the advocacy for civic participation in the construction of public policies, with particular reference to vaccination and prevention policies.

Vaccine monitoring Collaboration for Europe (VAC4EU)
Active Citizenship Network has recently signed a new Memorandum of Understanding with the Belgium non-profit organization Vaccine monitoring Collaboration for Europe (VAC4EU), the sustainability solution of the ADVANCE project which was funded by the Innovative Medicines Initiative, whose main missions are to: access and analyze available and newly collected health data to allow for evidence-based decisions by people, who need to either regulate, advise, prescribe or decide on vaccines; support reliable and rapid generation of evidence on vaccines in Europe; and train and to provide rapid access to a unique vaccine expert community and study network in Europe. ACN and VAC4EU have agreed to join forces to support each other’s initiatives on the promotion of public health, with particular reference to vaccination and prevention policies. The two will also commit to build synergy and consensus between different stakeholders in order to accelerate the empowerment of citizens and their participation in European public policies.

Teddy European Network of Excellence for Paediatric Research
Active Citizenship Network is glad to announce an official new partnership with Teddy European Network of Excellence for Paediatric Research, an independent multidisciplinary, multinational Network strongly proactive in the promotion and implementation of adequate health policies and a social awareness on the importance of the paediatric medicines across Europe. ACN and Teddy Network welcome and agree on the opportunity to work together at the EU level in order to support each other’s initiatives and projects on the promotion of public health as a common good, especially taking into account children peculiarities and contributing to the implementation of fundamental children rights in the biomedical field in the areas of healthcare and research, including vaccination.

Asociación Española contra la Meningitis
Active Citizenship Network is pleased to announce that a Memorandum of Understanding has been signed with the Asociación Española contra la Meningitis, which is currently the only non-profit organization fighting to defeat meningitis in Spain to protect the entire population from the consequences of this terrible disease. Active Citizenship Network and Asociación Española contra la Meningitis welcome and agree on the opportunity to work together at the national and EU level in order to support each other on the promotion of the protection of patients’ rights and to support each other’s initiatives on the theme of prevention and vaccination policies.

European Network of Fibromyalgia Associations (ENFA)
Active Citizenship Network has signed an official agreement with the European Network of Fibromyalgia Associations(ENFA), whose aim is to promote fibromyalgia awareness among politicians, physicians, scientists and the general public at the European level. The primary goal of the network is to get fibromyalgia as a key topic in the European Health Programme. ACN and ENFA have agreed to cooperate to educate and provide training to citizens, patients, physicians, and all the other relevant stakeholders regarding chronic conditions of patients and have strengthened their partnership to enable advocates to confidently brief policymakers in the field of pain relief.

EPECS
Active Citizenship Network is happy to announce that it has recently signed a new Memorandum of Understanding with EPECS, a non-profit Dutch foundation that wants to give a voice to the citizens of the EU and wants to engage them in policy development processes. Active Citizenship Network and EPECS will support each other’s initiatives with the objective to promote and accelerate the empowerment and engagement of citizens and patients and their participation in European public policies, activities, and dialogues as a key step towards a more inclusive Europe.

euPrevent
Active Citizenship Network is glad to announce an official new partnership with euPrevent, a Euroregional network that focuses on promoting cross-border health and sustainable partnerships to increase the quality of life of residents in the border region between the Netherlands, Belgium and Germany. In this regard, ACN and euPrevent have agreed to collaborate to increase protection of patients’ rights, diminish health inequalities among European Member States, and raise awareness on the needs surrounding patient care and patients’ quality of life.

Cyprus Federation of Patients’ Associations and Friends
Active Citizenship Network has recently formalized an agreement with the Cyprus Federation of Patients' Associations (CyFPA), an umbrella organization representing all the organizations of people with chronic and other diseases. CyFPA aims at supporting patients with a strong voice in the Cypriot community and ensuring that patients have access to holistic and equitable social health care, with quality and patient-centeredness. In this regard, Active Citizenship Network and the Cyprus Federation of Patients' Associations have welcomed the opportunity to collaborate to support each other’s initiatives on the empowerment and protection of patients, in particular those affected by chronic and rare diseases. Moreover, ACN and CyFPA will commit to raise awareness on the needs surrounding patient care and patients’ quality of life.

Instytut Praw Pacjenta i Edukacji Zdrowotnej
Active Citizenship Network has recently signed a new Memorandum of Understanding with its historical Polish partner Instytut Praw Pacjenta i Edukacji Zdrowotnej, an association aimed at improving the situation of patients, increasing civic awareness of pro-health attitudes and influencing the shaping of national health policy. The Institute also works to integrate the community of patients' organizations, organizes regular meetings with key experts in healthcare, takes an active part in social consultations, and conducts advocacy in cooperation with patients' organizations, among other activities. In this context, Active Citizenship Network and Instytut Praw Pacjenta i Edukacji Zdrowotnej agreed to work together on the improvement of patients’ access to care and on the promotion of patients’ rights and to join forces with the aim to accelerate the participation of patients in European public policies, activities, and dialogues.

Patients' Rights Association in Kosovo
Active Citizenship Network is glad to announce that an official agreement has been signed with Patients' Rights Association in Kosovo (PRAK), an independent non-profit and non-political association focused on promoting a fair healthcare for patients, engaging citizens and patients as equal partners in healthcare, and mobilizing other relevant actors to provide the best possible care for each patient at all times. ACN and PRAK will collaborate to raise awareness on the needs surrounding patient care and patients’ quality of life and to support each other’s initiatives on the topic of reduction of health inequalities, patients’ empowerment, and promotion of public health as a common good.

Events

21-23 March 2022: Active Citizenship Network in Stockholm for the NIGHTINGALE project to share experiences to better deal with large emergencies
From March 21st until March 23rd Active Citizenship Network will be in Stockholm to take part in the  ”Potential benefit of simulation techniques for scientific validation and comparative studies of different methods in mass-casualty management” workshop in the framework of the NIGHTINGALE project. The workshop will consist of the simulation of a terrorist bombing of a hotel and of a civilian mass shooting. The goal of the simulation is to illustrate the whole chain of mass-casualty management.

To know more:

- Visit the webpage of the NIGHTINGALE project

30-31 March 2022: Vaccine Virtual Days 2022
The value and importance of adult immunisation has generated active debates and discussions over the past year. Now it’s time to hear the latest science and data on vaccine technologies, barriers to immunisation, including hesitancy to vaccinate, and much more.
Active Citizenship Network has been invited in the panel for the session “Generating momentum around the world to implement adult vaccination” of Vaccine Virtual Days 2022, planned next March 31st (13:00 - 20:10 CEST). To know more, click here.

April 1 2022: Active Citizenship Network will attend the John Cabot University Spring 2022 Career Fair
The 1st of April Active Citizenship Network will be in Rome, Italy, among the various companies and organizations to provide internship opportunities to the university’s students. The John Cabot University’s Career Fair serves as an opportunity for students and alumni to begin investigating their future careers, practice their interviewing skills, and gain valuable work experience.

To know more:

- Active Citizenship Network’s educational partnerships

- Active for Young Professionals program

5-8 May 2022: Sine Dolore World Park 2022 open again!
After two years without being able to celebrate it due to the Covid-19 pandemic, the Sine Dolore World Park will return to be celebrated in presence in Menorca Island, Spain, from May 5 to 8, 2022. Organized by the Sine Dolore European Pain Foundation, a historical partner of Active Citizenship Network based in Spain, the Sine Dolore World Park is the first theme park in the world against pain and for the quality of life. To know more, click here to read an introductory article (ES language).


 


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

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