Jana Popova is PhD student and freelance journalist from Bulgaria.
When she was 10 months old, she was diagnosed with Spinal Muscular Atrophy (SMA), rare neuromuscular disorder, which leads to muscle wasting and mobility impairment.
Since the age of 15, Jana has been an active member of the Bulgarian Association for Neuromuscular Diseases and supports all Bulgarian patients’ organizations for neuromuscular disorders.
In October 2017 she became a member of the Executive Committee of the European Alliance Neuromuscular Disorders Associations (EAMDA.)
“My personal goal is to increase the awareness about NMD, to help patients with NMD to improve their quality of life and to overcome the physical limitations,” says Jana.
Jana has also been a part of the European Patient Forum (EPF) Youth Group since its inceptions in 2018.
Utilising her journalistic talent and expertise in media and digital communications, Jana has raised awareness of issues faced by the SMA community and rare diseases as a whole. Her advocacy work within the EAMDA Executive Committee, the EPF Youth Group and as a volunteer for the Bulgarian Association for Neuromuscular Diseases has been instrumental in encouraging cooperation between different European patient organisations for neuromuscular disorders.
“I believe the cooperation between organizations is an essential part of our work and only if we stand together, we can achieve better results in the global society.”
For her incredible advocacy work, Jana was recently named the EURORDIS Young Patient Advocate in the 2020 Eurodis Black Pearl Awards, an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day.
“This award recognises her boundless commitment to amplifying the voice of patients with neuromuscular diseases and other young patients, showing that together, patient advocacy can have a huge impact.”Tags: patient advocacy, rare diseases