Jana Popova is a Bulgarian 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 SMA, which is rare neuromuscular disorder. In 2018 she joined the EPF Youth Group and was elected as the first-ever Youth Group representative to the EPF Board in 2020.
She 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 for 2020.
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We are proud to announce that EPF Congress 2021 is Patients Included™. This means that EPF is committed to incorporating the experience of patients as experts in living with their condition while ensuring they were neither excluded nor exploited.More information