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Interview with Gilliosa Spurrier

Transcription I’m Gilli Spurrier-Bernard. I am a patient advocate because my husband is a stage 4 melanoma patient. As a patient advocate I initiated the Melanome France group...

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Interview with Jan Geissler

Transcription My name is Jan Geissler. I’m a patient advocate now for fifteen years. I’ve been diagnosed with chronic myeloid leukemia in 2001. At that time, diagnosis really...

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Interview with François Houÿez

Transcription I’m François. I’m 51. I work for the European organisation for rare disease EURORDIS, where my main role is to help patients navigating through the different procedures for...

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Interview with Klaartje Spijkers

Transcription My name is Klaartje Spijkers. I’m from the Netherlands. I’m a mother of a young boy with the Duchenne muscular dystrophy which is a progressive muscular disorder....

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Interview with Karen Facey

Transcription My name is Karen Facey. I am a statistician by training. I’ve worked in drug development, medicines regulation and health technology assessment. Since being involved in health...

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Interview with Joan Jordan

Transcription Hello. My name is Joan Jordan. I’m from Ireland. I’ve been … Well, I’ve become a patient advocate since I got diagnosed with relapsing-remitting multiple sclerosis in...

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Patients Involved – Psoriasis

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,...

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Patients Involved – Using user research

Introduction Novo-Nordisk, a pharmaceutical company, does user research with patients to enhance understanding of patients and to develop products that meet users’ needs. Where in the process? – Phase...

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Interview with Claas Röhl

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...

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