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...
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...
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...
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....
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...
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...
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,...
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...
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...
Introduction Involvement of European Tuberous Sclerosis Complex Patient Organisations (E-TSC) establishing an European registry of patients living with Tuberous sclerosis complex (TSC) to address some gaps in understanding the...
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