Her smile bright, her enthusiasm contagious, Jana is a 33-year-old patient advocate from Bulgaria who lives with SMA.

The daughter of medical doctors, Jana was raised aware of her condition and of the possibility of gradually losing her abilities. This motivated her.

At 15 years old, she became involved in patient advocacy, first locally, then at the European level. Today, with her extensive experience and vast knowledge, Jana sits on many prominent advocacy positions in SMA, neuromuscular disease, and beyond.

When she first started her advocacy journey, Jana could never have imagined reaching the point of achieving medicines for SMA.

All in all, Jana and her fellow patient advocates still have much to fight for, despite their success in achieving access and reimbursement for SMA medicines for all in Bulgaria. Their next goals are to raise awareness about SMA and available medicines. In adults leaving with SMA, many of whom are still wary of initiating treatment through medicines because they lack solid information in their native language. In local clinicians, to improve time-to-diagnosis and the delivery of state-of-art information about treatments. In the local government, to address pending needs including those for medical equipment that can improve quality of life. And, finally, in the society, to make sure that people living with SMA have equal opportunities for work, schooling, and full participation in social life.

^{Interview conducted on 4 March 2024}