Raising Awareness on Managing Competing Interests in a Multi-Stakeholder Environment: Guidance to Patients and Engaging Stakeholders – download the guidance below Background/Rationale for the document Managing competing interests and...
Access here the original research paper. Background/Rationale for the document: Capturing the ‘return on engagement’ is complex, given the many factors that influence the impact of patient engagement. This Patient Engagement...
1. Introduction Translational medicine also referred to as translational science or translational research, is defined[¹] as an area of biomedical research that aims to improve human health and longevity...
Part of a different era, activist or patient advocate? I started in patient advocacy in 1991. We didn’t call it patient advocacy back then. We got buckets of glue...
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...
Introduction Collaboration between patients and a Psoriasis Association representative with the ‘Focus on the Patient’ division from GSK, to understand the impact of psoriasis on the lives of patients,...
Transcription My name is Claas Röhl. I’m from Vienna, Austria. Two and a half years ago, I founded the patient organisation NF Kinder, and we fight for people who...
Transcription My name is Souzi Makri, I come from Cyprus. I’m an expert patient, I’m involved with the Cyprus League Against Rheumatism. I’m a member of the board,...
Transcription My name is Tetiana Zamorska, I’m coming from Ukraine. I live in the capitol of Ukraine, Kiev. My son was born with a rare skin disorder called,...
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