Dr Nicole Gusset is founder and president of SMA Schweiz, an organisation aiming to recognise and encourage promising research approaches in spinal muscular atrophy (SMA) and bringing these therapies to the patients. SMA is a rare genetic neuromuscular disease characterised by muscle atrophy and weakness. Ever since her firstborn daughter, Victoria, was diagnosed in 2011…Read More
What is quality of life for patients? How do we define it, we who struggle with it? And what do we need to improve it, practically? At the Swiss Patient Forum held on 28 September 2018, EUPATI CH brought together a vibrant group of patients, representatives, and their caretakers to brainstorm these burning questions in…Read More
Malena Vetterli, founder and president of FMF & AID Global Association: Familial Mediterranean Fever and Autoinflammatory Diseases, established in Zurich in 2017. The association has been elected into the European Reference Networks (ERN) Patient Advocacy Group, to actively represent patients. Malena is also a member of the Novartis Autoinflammatory Council and has been asked to…Read More
Dr Hansruedi Völkle (Positivrat), you will know him as our EUPATI CH President, but through this training, he is switching from being a teacher of students, to a student himself. Hansruedi originally studied physics and radiation protection, obtained his PhD, and became Professeur Titulaire at Fribourg University. He then worked for many years at the…Read More
EURORDIS Summer School 2018 (11 – 15 June 2018 in Barcelona) Patients are taking on ever increasing roles in advocating for medicines development, equal access to treatments across Europe and ensuring that medical information is clear, accurate and comprehensible. In order to help prepare them for these roles and as part of its commitment to empowering…Read More
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