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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 10th, number 105 - August 2022

Since July, Active Citizenship Network is in constant and close contact with its Dutch partner, Orphans Feeding Foundation, engaged in Ukraine to bring medicines to the war-affected population.
Below are some of the pictures sent to us on August 21, 2022 by the organization's co-founder, Mariam Lambert, who reached Ukraine on August 9 with the first batch of cancer drugs (1 ton). “I am in Kharkiv, the situation is horrific..We have around 8 missiles striking above our head every single night but we managed to complete our mission”. This is the short message she sent us from the front. In the past few days Mariam managed to establish a first contact with the ACN's local historical partner associations, Ukrainian Union of Patients' Organizations and Southern Ukrainian Center of Citizens' Rights in Health, whose leaders are in Kiev. To know more, click here and here.


Survey on personalized Medicine by the EU funded ExACT project
The aim of this survey is to gather the views of citizens in European Union Member States on personalized medicine. Personalized medicine tries to tailor healthcare to individual needs by taking the influence of genes, lifestyle and environment on health into account. Researchers need to combine data from many people to learn more about diseases. We would like to understand citizens' views on the use of their healthcare and lifestyle data, including genetic data and the sharing of such data. We would like to learn your views on how Personalized medicine may be applied in healthcare. With the results of the survey, we aim to contribute to responsible use of Personalized medicine, making citizens’ views available for policy to increase health benefits and reduce potential harms.
The survey has been developed as part of the ExACT project (European network staff eXchange for integrAting precision health in the health Care sysTems), funded by the European Commission under the Horizon 2020 Programme. The consortium consists of academic partners, such as university medical centers, and non-academic partners, such as the European Public Health Association EUPHA. For a complete list of partners, and more information on the project, see Partners (www.exactproject.net).

Click here to fill to the online survey

Patients' Rights

FACILITATing the process of patients' access to clinical trial data and managing re-use of data
We are proud to announce the #FACILITATE Project website is online! FACILITATE is a 4-year project launched by the Innovative Medicines Initiative (IMI), whose primary aim is to enable clinical trial participants to access and make use of their health data gathered during studies to allow a better shared medical decision-making with the health professionals involved in their care and to create a process that will enable data to be also re-used in future research. Its overall goal is to develop an innovative data-sharing and re-use process within a General Data Protection Regulation (GDPR) compliant and approved ethical framework, not only to allow the access and portability of patient data but also to change the role of patients in the strategy and design of clinical trials with many new rights and responsibilities becoming an active component of drugs’ development process. Find out more about the project here. Join our pool of Stakeholders. For more information, write to d.quaggia@activecitizenship.net 

Active Citizenship Network’s support to ‘This is Living’ communication campaign
Active Citizenship Network, together with other patients’ organizations, actively participates in the ‘This is Living’ communication campaign with the aim to support those living with chronic conditions, providing knowledge and experience from a variety of perspectives. The recently online website of the communication campaign has been developed by Boehringer Ingelheim International GmbH in collaboration with representatives from several patient organizations and others, to improve quality-of life. To know more, click here.

This is Living’”: every day a little better
This is Living’ is a collaboration of organizations, including Active Citizenship Network, who recognize that chronic conditions are a worldwide concern affecting individuals, their loved ones and society at large. We want to make a difference and help improve each day in some way. Small steps, big aspirations. ‘This is Living’ is about Inspiration, Tips and Advice, and Community. To follow us, please click here.

Network News

Active Citizenship Network keeps growing, and not only in Europe. In this newsletter we are going to report a series of agreements formalized at the 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.

World Federation of Incontinence and Pelvic Problems (WFIPP)
Active Citizenship Network has signed an official agreement with the World Federation of Incontinence and Pelvic Problems (WFIPP), a global platform mostly comprised of patient advocacy organizations, doctors, non-government organizations, and non-commercial entities, interested in acting as a helpful resource for all stakeholders, patients, families, carers, HCPs and institutions who are in some way involved in the patient pathway relating to incontinence. ACN and WFIPP have committed to empower citizens and patients in their participation in policies and dialogues on topics concerning, in particular, reduction of health inequalities, promotion of rights and a higher quality of rights of patients living with incontinence and pelvic floor dysfunction.

Federation of European Academies of Medicine (FEAM)
Active Citizenship Network is glad to announce the signing of a Memorandum of Understanding with the Federation of European Academies of Medicine (FEAM), a network of academies promoting cooperation between national academies of medicine, pharmacy and veterinary science across Europe. ACN and FEAM have agreed to collaborate to improve the health and safety of EU citizens by promoting the empowerment of citizens in European public policies, activities, and dialogues surrounding key healthcare issues as a key step towards a more inclusive Europe.

Evrensel Hasta Haklari Derneği - Universal Patients' Rights Association
Active Citizenship Network is glad to announce that it has recently signed a new Memorandum of Understanding with the Cyprian Universal Patients' Rights Association (UPRA), the only organization in the northern part of Cyprus whose mission is based on patients’ rights and who is offering support for patients and their relatives in their struggle with the violation of their rights. UPRA’s vision and mission take their essence from the European Charter of Patients’ Rights. For this reason, ACN and UPRA have become partners to support each other’s initiatives on the topics of the protection of patients’ rights stated in the European Charter of Patients’ Rights, reduction of health inequalities, patients’ empowerment, promotion of public health as a common good and have joined forces to raise awareness on the needs surrounding patient care and patients’ quality of life.

Agreement with Orphans Feeding Foundation
Active Citizenship Network is pleased to announce that a Memorandum of Understanding has recently been signed with the Dutch Orphans Feeding Foundation, a non-profit organization which supports orphans and vulnerable people globally. Orphans Feeding Foundation’s main objectives are the support of orphans and vulnerable children with regard to education, nutrition and health. Currently, Orphans Feeding Foundation focuses on supporting vulnerable populations suffering the war in Ukraine with continued healthcare, food and education. ACN and Orphans Feeding Foundation agreed to work together at the EU level in order to support each other’s initiatives and projects on the topic of the protection of patients’ rights and raise awareness on the needs surrounding patient care with relation to prevention. Moreover, ACN and Orphans Feeding Foundation commit 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.


6 September 2022 (Brussels): The European Care Strategy: Solidarity and sustainability - friends or foes?
The European Association of Paritarian Funds – AEIP and the International Association of Mutual Benefit societies – AIM are pleased to invite you to a joint event on the topic: “The European Care Strategy: Solidarity and sustainability - friends or foes?”, hosted at the European Parliament by MEP Sirpa Pietikäinen, on 6 September 2022 from 10:00 to 12:00 CET.  The event will gather EU-level key stakeholders, policymakers as well as experts from social protection institutions, healthcare mutuals, carers’ and older people’s organisations, to discuss how to ensure the sustainability and solidarity of European care systems, considering current challenges such as the increasing demand, the rising costs of treatment and innovation, ageing populations and the consequent decrease in social contributions.
Where? In person: Brussels, European Parliament, room ASP 3E2. Or online: (Zoom / Webex) link to be shared upon registration. Registration is open here. For any further information and questions, please contact Giuseppe Perretti (AEIP) and  Jessica Carreño Louro (AIM).

13 September 2022: BIORECER Kick off meeting
The Kickoff meeting of the new EU project BIORECER – which has received funding from the European Union’s Horizon – will take place online next 13th September from 9:30h to 17:30h. 
BIORECER (Biological Resources Certifications Schemes) aims to ensure the environmental performance and traceability of the biological feedstock used by bio-based industries by deploying guidelines to strengthen the current certification procedures. Through this approach, bioproducts' added value, use, as well as social acceptance will be increased. In this project, Cittadinanzattiva/ACN is mainly involved in coordinating and supporting the stakeholders' involvement process. Read more

23 September 2022: PAE General Assembly
The next General Assembly (GA) of Pain Alliance Europe (PAE) members will be held virtually on Friday, 23 September 2022, at 15:00 CEST. This will be the last PAE Board Meeting for Marisol García Penalta from ASPERGA (ASOCIACION GALEGA DE ASPERGER) and Mariano Votta from Cittadinanzattiva-Active Citizenship Network, as their mandate is expired, and the GA will host the elections of the new Board members.  Cittadinanzattiva/ACN entered into the board of Pain Alliance Europe (PAE) in the second half of 2012.Read more

29 September 2022, Bruxelles (Belgium): Towards energy aware behaviours: how studies on young generations can inform better policy design
In the framework of the European Sustainable Energy Week (EUSEW) that will take place from 26 to 30 September in Bruxelles with a hybrid format, the NUDGE consortium – in which Cittadinanzattiva is officially involved - is organizing a session from 09:30 to 11:00 together with the sister EU H2020 projects ENCHANT, DECIDE and WHY.
The speakers will join a panel of policymakers, youth and consumer representatives focusing on how to design policies that can favour a large-scale change in how we produce and consume energy and how to include youth in energy policies at various levels. To register, click here.

13 October 2022, Turin (Italy): HPH Piemonte Regional Conference "A healthcare for community: civic participation and development of territorial healthcare"
The 2022 HPH Piemonte Regional Conference, this year entitled "A healthcare for community: civic participation and development of territorial healthcare", will take place in Turin on October 13, 2022 and in virtual conference to accommodate those who do not have the possibility to be in presence. The Conference, organized by the International Network of Health Promoting Hospitals and Health Services (HPH) in collaboration with Cittadinanzattiva-Piemonte, will be dedicated to deepening the concrete links between the development of local services and civic participation and will be divided into three sessions: the first will concern the assessment of the progress, in the Piedmont Region, of four crucial actions for the achievement of the objectives of Ministerial Decree 77/2022; the second session will include a comparison between regional experience and national policies, with the presence of exponents of the Health Ministry and the National Agency Agenas; lastly, the third session will provide a reasoned overview of successful experiences in progress and already implemented. To know more, download the programme.


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

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

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Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net