The EUPATI Luxembourg NLT is looking for a patient organisation partner to lead the team. The NLT indeed needs patient organisation’s contribution to ensure that it reaches out to the patients and the public with the right answers to their questions about medicines development.
For further information visit the EUPATI website. If you are interested in joining the EUPATI Luxembourg NLT or wish to know more about it, please contact Manon Gantenbein (email: manon.gantenbein@crp-sante.lu )
The IMI-funded consortium project EUPATI will provide scientifically reliable, objective, comprehensive information to patients on medicines research and development. It will increase the capacities and capabilities of well-informed patients to be effective advocates and advisors in medical R&D, e.g. in clinical trials, with regulatory authorities and in ethics committees.
The project was launched in February 2012 and will run for 5 years.
During the course of the project, the Patients’ Academy will:
- develop and disseminate accessible, well-structured, user-friendly, objective and credible educational material on therapeutic innovation;
- establish a public library on how medicines R&D works in seven most common European languages (English, German, Spanish, Polish, French, Russian and Italian);
- build competencies and expert capacity among well-informed patients and the public;
- facilitate patient involvement in medicines R&D to support researchers and authorities.
EUPATI will make a substantial and measurable difference to patients, providing the tools and the knowledge for their meaningful involvement and empowerment in pharmaceutical innovation, safety of medicines and access to treatments. It will inform the lay and hard to reach patient community, raising public awareness of the development of new treatments. Find out more about the Patients' Academy below.
The Patients' Academy will reach out to three audiences: Expert patients, advocacy leaders and the lay public at large:
It will target specifically patient organizations, advocacy leaders and the lay public in the countries speaking English, German, Spanish, Polish, French, Russian and Italian.
The objective of the Patients' Academy is not to inform patients and the public about disease-specific issues or therapies, but e.g. on process, complexity and issues related to new medicines development as well as access issues in general. Indication-specific information or medical interventions are within the remit of health professionals as well as patient organisations outside of the Patients’ Academy.
Therefore, such indication-specific information may only be used to illustrate specific issues on medicines development, e.g. clinical trial design, informed consent procedures, risk/benefit assessment, vulnerable groups etc.
A consortium of 30 organisations, led by the European Patients' Forum, comprises a unique combination of pan-European patient organisations, academic and not-for profit organisations and EFPIA member companies, bringing in key expertise in patient advocacy and processes for research and development in medicines.
All the members of the consortium are listed here: http://www.patientsacademy.eu/index.php/en/about-eupati/9-the-consortium
The Patients' Academy will develop educational modules for the following areas:
1. Medicines development process from research to approval
2. Personalized and predictive medicine
3. Drug safety and risk/benefit assessment of medicines
4. Pharmaco-economics, health economics and health technology assessment
5. Design and objectives of clinical trials ( roles of stakeholders)
6. Patients roles responsibilities in innovative medicines development
The Patients' Academy is a highly collaborative project with partners from very different fields including patient groups, academic organisations and pharmaceutical organisations. Objectivity, transparency and independence are vital prerequisites to ensure that EUPATI achieves its goals and is accepted and valued by both the patient community and the wider public.
The project is led and supervised by:
http://www.patientsacademy.eu/index.php/en/about-eupati/15-advisors
EUPATI's Ethical Framework (http://www.patientsacademy.eu/index.php/en/about-eupati/28-governance/130-ethical-framework ) sets the ground rules for anonymity, confidentiality, informed consent, social research, ethical review, professional integrity and publication ethics. According to the Ethical Framework, every member of the EUPATI Consortium or EUPATI Committee, Panel or Task Force is asked to return a Declaration of Interest form. The Consortium members have developed collectively a Code of Conduct (http://www.patientsacademy.eu/index.php/en/about-eupati/28-governance/131-eupati-code-of-conduct ) that describes the key principles and values underpinning our work and core to this Code are transparency and independence and trust.
Manon Gantenbein: manon.gantenbein@eupati.eu / tania.zamboni@eupati.eu
We are looking forward to hearing from you!
The Patients' Academy has been set up 'for' and 'with' patients and we are keen to collaborate with all groups interested in the education about medicines RD. Please get in touch with us!
EMail: info@patientsacademy.eu
Web: www.patientsacademy.eu
Twitter: @eupatients
LinkedIn: EUPATI
Facebook: www.facebook.com/eupati.eu
Google+: gplus.to/eupati
Tel. +49 (89) 66086968
Project Coordinator and Managing Entity
European Patients' Forum a.s.b.l. (EPF)
http://www.eu-patient.eu
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