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Rare Diseases
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EUPATI
EUPATI emerged from the acknowledgement that patients across the EU want and need more information on therapeutic innovation but are largely unaware of undertaking research and defining their role. On the other hand patient advocates play a key role in providing information, but may lack education and training to participate in research and drug development processes. This innovative patient-led academy aims at developing educational material, training courses and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development. IPPOSI's CEO Eibhlin Mulroe is currently Taskforce Leader for Work Package Two (WP2) which will build a strong EU-wide network of stakeholders to enable optimal knowledge-sharing and expertise on all six topics of interest. The network will consist of members of patient organisations from a broad range of diseases in all European countries, investigators, academic and industry health researchers, health professionals, competent authorities, ethics committees, Regulatory and HTA authorities, journalists, patients and carers, etc. WP2 will organise Annual Conferences and Regional Workshops and will initiate and support the establishment of National EUPATI Platforms. WP2 will also coordinate the EUPATI Ethics Panel. IPPOSI will continue to keep members informed of our work in this area. To know more about the project, please visit EUPATI website
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Patient Registries
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Clinical Research
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Access to Medicines
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Stakeholders' Forum - BBMRI
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IPPOSI Consensus Submissions
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