Creating a community for young people with NMD

Jana Popova
Jana Popova
  • 20 minute duration


As a person diagnosed with neuromuscular disorder I rely on the help of patients’ organizations. I am very much convinced that thanks to their efforts, patients would have better chance to observe how different health systems in Europe work and they are able to understand the pros and cons of healthcare systems in their own countries. Being a patient, I believe it’s important to stay united and to work together as a patient community.

It is my understanding that young patients could provide valuable perspective and they deserve to be involved in the decision-making process of patient advocacy from the beginning. That is why I am interested in this session and I believe that together we can exchange valuable experience about young patients’ involvement in patients’ organizations and how to present young people’s needs in the best possible way. Young patients are young people and we deserve our voices to be heard.

Learning outcomes

  1.  Better understanding of young patients’ needs.
  2.  How to engage young patients in patients’ organizations.
  3.  Projects and topics which are interesting for young patients.
Jana Popova
Jana Popova
Jana Popova is from Bulgaria. She 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.