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Patients Involved – DevelopAKUre for AKU

Patient Engagement

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...

Patients Involved – Ethnography and advocacy in sickle cell disease

Patient Engagement

Introduction A case report on trained medical anthropologists shadowing people with sickle cell disease(SCD), to gain new insights into the world of what it’s like to live with the...

Patients Involved – HIV DUET Phase III trials

Patient Engagement

Introduction A patients involved case report of patient advocacy in HIV DUET Phase III trials for a novel treatment regime using a combination of two investigational compounds: TMC125 (etravirine)...

Patients Involved – Direct patient insight on Lupus

Patient Engagement

Introduction A case report on Phase I patient involvement into study design through interviews where they share their views on the disease and the cutaneous symptoms. The information that...

Patients Involved – Duchenne Parent Project

Patient Engagement

Introduction Development of a cure/treatment for Duchenne, by the Duchenne Parent Project in collaboration with Leiden University and Prosensa (Biotech partner) – GSK. Description of the case Development of...

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