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 102 - May 2022

Advanced Therapy Medicinal Products (ATMPs) revolution: empowering leaders of EU civic & patients’ advocacy groups - join new ACN EU training seminar!

To virtually attend the training, please click here (registration is free but mandatory)

On the 24th of May 2022 from 3 to 5 pm (CEST), Active Citizenship Network organizes a European training on Advanced Therapies Medicinal Products (ATMPs) as part of the #VITA - Value and Innovation of Advanced Therapies project.
Targeted to the leaders of civic & patients advocacy groups across Europe, 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.
For further information on the event agenda and the speakers, please click here. More information on the project here.

Introductory documents:

- Rationale of the initiative

- An overall overview about ATMPs

- Technical Policy Report from the #VITA Working Group The economic evaluation of advanced therapy medicinal products: characteristics and reasons for a new economic and accounting approach” (ENIT)


#VITA: Value and InnovaTion of Advanced therapies

Cittadinanzattiva is engaged in a project to promote at the European level the importance of access to advanced therapies by the highest possible number of patients in the light of the fact that by 2030 there could be as many as 60 advanced therapies that could change the life of 350 thousand patients, but to do this, the accounting system must be changed.
To raise awareness of this need, which is at the same time a great opportunity, Cittadinanzattiva, thanks to its EU branch Active Citizenship Network, will organize the following events: a training webinar, a call to action aimed at European decision-makers, and a policy dialogue with the EU Institutions and the involvement of the key stakeholders.
The general objective is to promote the importance of advanced therapies bringing the issue of access to the attention of the patient and civic associations and create consensus regarding the "Italian solution", that is, the fact of accounting for expenditure as a multi-year investment and not as a current expenditure (like a drug that runs out of results in the very short term). Stimulating widespread awareness of the rights to personalized treatments, innovation, and access. Promoting empowerment on the issue of advanced therapies. Strengthening, on the subject, the coalition between Patient and Citizen Associations in Italy and Europe. For further information consult the LinkedIn page or the project webpages (ENIT versions).

Our recent press articles (all in IT language)

- Entro il 2030 in arrivo 60 nuove terapie geniche

- Sedicimila terapie avanzate in sperimentazione, 60 in arrivo. La sfida alle malattie (oggi) incurabili

- Terapie avanzate, serve cambiare le politiche di bilancio europee

- Le opportunità e le sfide delle nuove terapie avanzate (12)

Patients' Rights

The value of Adult Vaccination - EU training seminar: download all the materials!
Within the framework of the #VaccinAction2022 EU project, Active Citizenship Network on the 29th of April 2022 has organized the seminar titled “Adult Vaccination: build the capacity and capabilities of civil society”. It has consisted of a 2-hour training seminar which has been 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 benefit. Please download key speakers’ speeches here and watch the entire webinar on Youtube.
To know more about our engagement at the national and at the EU level on vaccination, please click here.

New ACN’s article on the International Journal of Virology & Infectious Diseases
The new manuscript drafted by Active Citizenship and titled “Addressing the Challenges of COVID-19 Pandemic on the Routine Vaccinations across Europe: Focus on Flu Vaccination” has been recently published on the peer-review International Journal of Virology & Infectious Diseases. The article shows the main results of the two recent surveys carried out at the EU level by Active Citizenship Network, both realized in the Eu Project entitled “Protecting the value of vaccination during - and after - the COVID-19 pandemic across Europe: impact, experiences and perspectives from citizens’ and patients’ advocacy groups & relevant stakeholders”- #VaccinAction2021. To read the article, please click here, for the download, click here.

Active Citizenship Network meets DRIVE, read the interview!
DRIVE-Development of Robust and Innovative Vaccine Effectiveness is an Innovative Medicines Initiative focus on vaccination. A multistakeholder approach in health-related studies is an upward trend. Patient groups' engagement and involvement have particularly become important in vaccine research not only to ensure equity, accountability, and transparency but also to develop partnerships and networks and to include their perspective and need in the analysis.  Active Citizenship Network (ACN) - as DRIVE patient collaborator representative - answered some key questions on the impact of Covid-19 in their work and the importance of their involvement in a project such as DRIVE. Read more here

European Stroke Awareness Day
In line with its multi annual commitment on CVDs prevention and in continuity with our recent EU project “EU PAGs & citizens together in the fight against stroke”, Active Citizenship Network is glad to support the European Stroke Awareness Day, planned next 10 May, and the related initiatives to its knowledge partner Stroke Alliance for Europe – SAFE.
The high blood pressure is one of 10 key modifiable risk factors of stroke, and according to recent statistics from Eurostat (European Commission research), 1 in 5 Europeans have high blood pressure – the highest levels were recorded in Croatia, Latvia and Hungary. The majority of strokes can be prevented by changing lifestyle and behaviours. Stroke prevention is a target outlined in the Stroke Action Plan for Europe. National stroke plans need to include stroke prevention and public health interventions to promote healthy lifestyles and reduce the number of strokes in Europe.  Visit SAFE’s stroke prevention website for the latest facts and information to help people reduce their risk of stroke. It is available in six languages - English, French, Polish, Portuguese, Russian, Spanish.

Consumers' Rights

European Sustainable Energy Week
Cittadinanzattiva through its EU branch Active Citizenship Network is involved in the European Project NUDGE (NUDging consumers towards enerGy Efficiency through behavioral science) and related to this we will participate in the call to host Sustainable Energy Days  that is now open. Taking place between June and September this year, Sustainable Energy Days bring the European Sustainable Energy Week (EUSEW) 2022 to the heart of local communities, showing citizens how they can join the clean energy transition. Events can take place online or physically, anywhere around the world, as long as its focus is on renewable energy or energy efficiency. From awareness-raising to public discussions, workshops, and debates, organizers are encouraged to get creative with the format of their event and aim for an interactive approach: inspire audiences to play an active role in the promotion of renewable energy. To know more, click here.

Civic Activism

Active Citizenship Network as European Citizens’ Initiative’s ambassador in Brussels
Invited by the EU Commission, on the 1st of June 2022, Active Citizenship Network will take part in the ECI Network Gathering – Connecting your ideas in Brussels. The Networking Gathering brings together ECI National Contact Points, ECI ambassadors, members of the European Economic and Social Committee ECI group, representatives of the ECI Forum as well as experts from the European Commission, the European Parliament, Europe Direct Centres and other relevant stakeholders.
In this interactive meeting, we will have the chance to meet the other members of the network, share our experiences and tips from our national/professional context about communicating about active citizenship and democracy in general and the ECI in particular, and make suggestions regarding how the network could most effectively work together to make the ECI better known.
The European Commission aims to gather a collection of action points and replicable ideas to share after the event within the ECI network. We are invited to already reflect on the examples you want to bring into the wider group, to co-create the final output.
This gathering is organised in parallel with the ECI DAY 2022 conference organised by the European Economic and Social Committee and partners, which takes place in Brussels on 2 June, allowing the opportunity to participate in that event as well.

ACN’s voice at the General Assembly of the EU-Russia Civil Society Forum
As Member of the EU-Russia Civil Society Forum, Active Citizenship Network will join its next General Assembly that will take place online on 24 May 2022. In the past days the forum has launched an anti-war initiatives of Forum members and partners. For further information please consult their website.

Networking News

Active Citizenship Network keeps growing, and not only in European Union. In this newsletter we are going to report a series of agreements formalized in this last period, 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.

Together for Life
Active Citizenship Network is glad to announce that a Memorandum of Understanding has been recently formalized with Together for Life (TFL), an Albanian nongovernmental and not-for-profit organization aiming at the development and empowerment of people, the protection of health rights, and the building of civil society at the national level, with a particular focus on vulnerable communities, including communities living in remote or economically less advantaged areas, women and youth. Active Citizenship Network and Together for Life welcomed the opportunity to work together at the EU level in order to support each other’s initiatives and projects on the common areas of interest, including the protection of patients’ rights, reduction of health inequalities, patients’ empowerment, and promotion of public health as a common good. In this regard, TFL has officially endorsed the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”, focused on patients’ rights, in order to recognize the value of citizens’ initiatives and contribute to the building of a civil society at the EU level.

Diabetic Association of St Michael and Sta Maria
Active Citizenship Network has recently formalized an official partnership with the Azorean Diabetic Association of St Michael and Sta Maria, a non-profit institution aimed in combating and supporting the treatment of diabetes, and promoting training, prevention and scientific research in the field of diabetes. Active Citizenship Network and the Diabetic Association of St Michael and Sta Maria have agreed to collaborate at the EU level to raise awareness on the needs surrounding patient care and patients’ quality of life, focusing on patients suffering from chronic diseases, and to accelerate the participation of patients in European public policies, activities, and dialogues to foster research and development on patients’ rights. For further information please click here.


20 May: Coalition for Vaccination: ACN participation to develop vaccine’s awareness
As an associated member, Active Citizenship Network will take part in the annual meeting of the Coalition for Vaccination. The Coalition aims to support delivering accurate information to the public, combating myths around vaccines and vaccination, and exchanging best practices on vaccination. Healthcare professionals’ role is to reassure people that vaccines are safe and effective.
The Coalition for Vaccination brings together European associations of healthcare professionals and relevant student associations in the field. It was convened by the European Commission in 2019 based on the 2018 Council recommendation on strengthened cooperation against vaccine-preventable diseases. For further information please click here.

20 May (10.00-11.00 CEST): Webinar to launch survey on personalized medicine for EU citizens
Personalized medicine holds great promise to tailor health care to individual needs, while taking account of genes, lifestyle and the environment. To reach that goal researchers need to collect information on genes and health of many people to better understand disease mechanisms. In the ExACT project funded by the European Commission a survey has been prepared to ask citizens about their views on the development of personalized medicine. What do citizens know about this innovation in health care, what are their views on data sharing and what are their concerns with the various options to collect and share their data? The survey will become available in various EU countries, for which collaboration is sought with organizations from the Active citizenship Network. The survey will be launched at the EUPHA Public Health Week on May 20 during a webinar with speakers from, among others, the Università Cattolica del Sacro Cuore in Rome and the University Medical Centre in Amsterdam. Click here to join the webinar via Zoom (Meeting ID: 815 2450 7949). For more information, please contact: surveypersonalizedmedicine@amsterdamumc.nl.

21 June 2022: Training seminar on Antimicrobial Resistance (AMR)
Active Citizenship Network is glad to invite you on 21 June 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 realized only in Italian language, without any translation (registration is free but mandatory).
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 know more:

- Visit the webpage of the AMR Patient Alliance project (EN - IT)

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


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

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