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Patients Involved – An ultra orphan disease

Introduction A collaboration of Genzyme, International Pompe Association (IPA); UK, Dutch, and US Pompe patient organisations, Erasmus Medical Center and Duke University to establish appropriate measures to ensure the...

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Patients Involved – Clinical trial design

Introduction An example of patients involved through patients and patient organisations providing inputinto a Cushing’s disease clinical trial design. The consultation took place between Novartisand nurses from different teams (USA, Canada,...

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Patients Involved – DevelopAKUre for AKU

Introduction An example of public-private partnership from diverse international groups in industry (Sobi), patient organisations (AKU Society and ALCAP), hospitals (Royal Liverpool, Hospital Necker, and National Institute of Rheumatic...

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Enhanced EUPATI Industry Guide

Enhancement of the EUPATI industry guidance Background/Rationale for the documents During the PARADIGM project further expansion of specific sections of the EUPATI Guidance for Patient Involvement in Medicines Research...

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