The PERC collected real stories from academic researchers, patients and carers who collaborated together. Through those short video stories, you will discover why the researchers engaged with patients, what  carers, patients and researchers concretely did together and the impact of those activities. At the end of each video story, you will also hear from them their tips for successful patient-researcher engagement. Would you like to share your story with us? We would love to hear from you and expand our video stories collection,  please contact us via the Get In Touch page. 

Story of Valentina and Claas

During the science4all project, funded by the Ludwig Boltzmann Society, Valentina and Claas worked on patient involvement in basic science in the field of lung fibrosis. To achieve this goal they developed a workshop series with basic scientists and patients/ caregivers in Austria. The goal was to improve the bilateral understanding and to educate the patients and caregivers in order to allow a fruitful discussion on innovative, fundamental research on lung fibrosis.

Story of Stan and Larissa

Prof. Dr. Stan van de Graaf (Amsterdam UMC) and Dr Larissa de Lannoy (patient advocate) give their insight into patient engagement regarding Primary Sclerosing Cholangitis (PSC), a rare progressive liver disease associated with fatigue and itch.

Story of Barbara and Oriana

Oriana and Dr Barbara Rivera share their journeys and their current collaboration in research for Rare Ovarian tumors, such as small Cell Ovarian Cancer, a highly lethal rare cancer threatening young women’s lives. Patients’ collaboration was fundamental in disclosing unmet needs, bridging the breach between researchers and patients in their understanding of the disease process and in triggering research breakthroughs.

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