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 with SMA Type II, Nicole has been investing her time in patient advocacy. “The EUPATI patient expert training provided me with tools to advocate in an even more effective and goal-orientated way for the needs of patients,” said Nicole about the training. “The face-to-face meetings were especially inspiring. They provided us with a wealth of information that cannot be read in books, but can only be learned by talking to others and exchanging our experiences.”
She has two key goals: to develop well-informed patients with a strong common voice by providing them with up-to-date information on scientific achievements; and to build a trusting relationship with regulators, payers, pharmaceutical companies, clinicians, scientists, and patient groups, so to develop the best potential medicine for patients and reach them by campaigning for patients’ needs to different stakeholders.
Nicole represents SMA Schweiz serving on the board of SMA Europe as its vice president. SMA Europe is an umbrella organization for 17 SMA patient and research organisations Europe-wide. She is also a member of the patients’ advisory board of the SMA Foundation US and a board member of the Swiss neuromuscular organisation, Schweizerische Muskelgesellschaft.
Additionally, Nicole represents the patient’s voice in several Swiss national committees, such as the Swissmedic Working Group for Patient and Consumer Organisations and the SAMW sub-committee for reproductive medicine / PID (pre-implantation diagnostics). She has also contributed to pharma-led initiatives on engaging with patients and has been invited to both patient-focused and scientific advisory boards.
After a university degree at the ETH Zurich, Nicole gained her PhD in Behavioural Ecology at the Freie Universität Berlin, Germany. She then worked for several years at the Swiss Federal Veterinary Office as a scientific officer and deputy head of the unit dealing with bilateral agreements with the European Union. Currently, Nicole is employed at the University of Zurich as a scientific project coordinator.