Jana Popova (Bulgaria) is a PhD student in the field of media and digital communications at Sofia University and freelance journalist. She is a member of the Bulgarian Association for Neuromuscular Diseases and an Executive Committee member of the European Alliance of Neuromuscular Disorders Associations (EAMDA). This is an European umbrella organization for associations, related to people with neuromuscular disorders (NMD). Jana is also a patient with NMD. In 2018 she joined the EPF Youth Group – it consists of young patients’ representatives with different chronic conditions. Jana is a member of different working groups in the field of equal access to healthcare, drug information and transparency and patient engagement in translational research. She is recipient of the EURORDIS Black Pearl Award for Young Patient Advocate. At the EPF AGM 2020, Jana was elected as a Youth Group representative to the EPF Board.