EPF is an umbrella patient organisation that works with patients’ groups in public health and health advocacy across Europe. EPF members represent specific chronic disease groups at EU level or are national coalitions of patient organisations. With over 15 years of work in the EU arena, EPF has a strong track record of successfully managing and completing complex EU-funded projects. Through consultations with a diverse membership across Europe, EPF gathers patients’ views and channels their voice to inform decision making in public health, health-related research and in the definition of innovative patterns for patient involvement.
PREVIOUS PROJECTS AND ACTIVITIES CONNECTED TO THE PROJECT
• EUPATI is a patient-led initiative that aimed to develop the first European Patients’ Academy on Therapeutic Innovation, with educational tools and activities designed to empower patients to engage more effectively in the medicines lifecycle and become true partners in pharmaceutical R&D. EPF, coordinator of the IMI-funded project, is ensuring continuity of the initiative.
• PREFER aims to assess when and how patient preferences on benefits and risks should be incorporated into decisions on medicinal products. The goal of PREFER will be to provide a set of systematic methodologies and recommendations to assess, engage and include patient perspectives during the development, approval, and post-approval of new therapies. EPF contributes the patient perspective as part of the Patient Advisory Group.
• PARADIGM is an IMI-project led by EPF and EFPIA and aims to develop a framework that allows structured, meaningful, sustainable and ethical patient engagement throughout three key decision-making points of the development of medicinal products (prioritisation of research, early dialogue between regulators and HTA and design of clinical trials).
• PFMD- Patient Focused Medicines Development – aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. PFMD is an open, independent global coalition of health stakeholders.