News

The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. Nicole Gusset appointed President of SMA Europe with immediate effect

    Dr Nicole GussetSMA Europe is delighted to announce that Nicole Gusset has been appointed as President. This appointment is effective immediately and follows Mencía de Lemus’ decision to step down as president of SMA Europe.

    We are fortunate to have someone of Nicole Gusset’s calibre step up to lead SMA Europe.  Nicole has a scientific background, working as a Programme Manager in Ecology at the University of Zurich. She also brings with her a wealth of experience in the non-profit sector. Nicole’s first-born daughter, Victoria, was diagnosed with SMA Type II in 2011. As a result of this, Nicole has become a very active patient advocate. She is Founder and President of SMA Schweiz, a EUPATI Fellow, President of the Swiss Neuromuscular Diseases Association and member of various Swiss Committees and Advisory Boards.

    As a patient expert, Nicole strongly supports evidence-based patient advocacy and is committed to the best possible research in drug development and care, as well as the access to these for all patients.

    Nicole said: “Systematic needs assessments in people living with SMA help to identify patient-relevant gaps but only by working together with all stakeholder in the area, can these be filled to the benefit of all patients”.

    Nicole is working to ensure that the patient experience and expertise is held paramount by key stakeholders. But also, to ensure that individual patients have comprehensive information to make informed decisions about therapies and care.

    SMA Europe is thrilled that Nicole will lead the organisation into its next chapter. Nicole said, “I am delighted for this opportunity to work with our members and partners towards evidence-based patient advocacy in SMA”.