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.
Active Citizenship Networks supports the dissemination of this survey, which aim 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).
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.
Active Citizenship Network has published in March 2022 a manuscript entitled "Supporting Non-Communicable Disease Patients in Time of The Covid-19 Pandemic: From Motivating Them to Qualifying the Role of Their Caregivers"on the international peer-reviewed Journal of Women Health Care and Issues, that aims to publish scholarly articles describing clinical examinations, investigative studies and practices related to etiology, diagnosis, treatment and prevention. In this context, the article published by ACN explores the impact of the pandemic on patients suffering from non-communicable diseases (NCDs). More in particular, the article discusses about the role of caregivers across Europe as invisible actors who informally help patients in the shadow, with considerable expenditure of physical and mental energy.
In the framework of the media partnership with Epidemiology and Public Health Research (EPHR), a journal focused on research and reports discussing about public health, epidemiology and progress that have been made to enhance societies' healthcare internationally, Active Citizenship Network has published, last December 2021, a manuscript entitled “Influenza vaccination at the time of Covid-19: From the Italian case history to the “EU Flu Day”, discussing about how the national (Italian) and European contexts managed the administration of flu vaccination during the Covid-19 pandemic. To do this, the article puts forward the results emerged from the civic survey on the supply of flu vaccine doses conducted by Cittadinanzattiva in September 2020 across Italy and introduces the second EU survey entitled "Addressing the challenges of concomitant deployment of COVID-19 and influenza vaccination" launched by ACN on the occasion of the EU Flu Day 2021.
Last 10 January 2022, Active Citizenship Network has published a new article entitled “The National Recovery & Resilience Plans According to Citizens’ Perspective: From the Italian Case History to the XVI European Patients’ Rights Day” on the international peer-reviewed journal Clinical Research and Clinical Trials, which publishes original research, reports, editorials, reviews and commentaries on all aspects of pharmaceutical, clinical trials, researches and related medical research methodologies. The newly published manuscript discussed about the significance of the engagement and empowerment of all European citizens, Patients' Advocacy Groups (PAGs), citizens organizations involved in healthcare issues and, more generally, to all actors that promote health as a common good, as a way to improve the health system. More in particular, the article focuses on the promotion of civic participation in the drafting and implementation process of National Recovery and Resilience Plans (NRRPs).
Active Citzenship Network has recently published, on 11 April 2022, a new manuscript dealing with the topic of therapeutic adherence entitled “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”on the International Journal of Epidemiology and Public Health Research, a peer-reviewed journal that encompasses all aspects of epidemiology and community health. The article examines the data emerged from the EU civic survey “The impact of the Covid-19 pandemic on non-communicable and chronic patients’ therapeutic adherence across Europe”, conducted by ACN in the second half of 2021, which show the inadequate attention of institutions and the main stakeholders in relation to access and continuity of care for non-Covid-19 patients.
Last 22 April 2022, Active Citizenship Network has published an article entitled “Addressing the Challenges of COVID-19 Pandemic on the Routine Vaccinations across Europe: Focus on Flu Vaccination” on the International Journal of Virology & Infectious Diseases, an international, peer reviewed, open access, scholarly journal that brings about latest research in all related aspects of virology and infectious diseases. The published manuscript discusses about the challenges of dealing with the concomitant deployment of COVID-19 and influenza vaccination, exploring the results emerged from the II EU online survey, realized in October-November 2021 by Active Citizenship Network in the framework of its #VaccinAction2021 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”.
If you missed the EU training seminar “ATMPs revolution: empowering leaders of EU civic and patients’ advocacy groups” here you can find the recording link and all the documents related to the #VITA project (Value and Innovation of Advanced Therapies), including the presentations of the speakers: prof. Andrea Grignolio, prof. Andrea Cicchetti and Leire Solis from IPOPI.
The training dealt with three main topics:
The pdha.eu website is now officially ready to receive all of the innovative and exciting digital health solutions for improving care and quality of life for patients and their caregivers that participants will submit! The window for the Call for Applications has been activated on 7 June at 11.00 pm CET and will remain open until 6.00 pm CET on 8 July. Winners will be announced at the European Pdha 2022 Virtual Award Ceremony on 10 November from 4.00 pm to 5.00 pm CET, and for the second year in a row, Active Citizenship Network is involved in the Jury. To apply click here. To know more:PDHA'S origins and mission