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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.
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.
‘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.
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).
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.
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
Over the last years, ACN has established a media partnership with Syncsci Publishing, a company dedicated to publishing high quality articles that provide innovative and scientific research findings to scholars worldwide. ACN and Synsci have agreed on the opportunity to work together in a media partnership to support initiatives that educate citizens, patients, physicians, and relevant stakeholders, and to submit potential manuscripts on the topic of public health and the aspects related to it, including, but not only, vaccination, NCDs, chronic pain.
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