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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.
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.
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.
‘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.
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, 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.T
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.
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.
As part of this long-standing partnership with Advances in Health and Behavior (AHB), Active Citizenship Network has recently published, last May 2022, the article "Isolated but not alone: the response to the pandemic in the story of PAGs from the Italian case history to the Global Health Summit “Rome Declaration”". In occasion of the Global Health Summit held in Rome last May 21, 2021, the article analyzed the condition of chronic and rare patients during the Covid-19 pandemic through the findings emerged from the XVIII National Report on Chronic Policies of Cittadinanzattiva, presented on October 13th, 2020, and entitled: "Isolated but not alone: the response to the pandemic in the story of Patients Advocacy Groups (PAGs)".
The media partnership between Active Citizenship Network and Geneft,an online global open access publication company encouraging innovative and original works primarily in the area of health and medicine, was established to facilitate the exchange of good practices on the issues that are pertinent to them and to support each other’s activities at the European and international level in common areas of interest.
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