Raised in a family of doctors, Maja, instead chose a career working across the fields of staff training and sales management. Most recently she was a supervisor and patient advocate within a dementia team in Stockholm. However following the birth of her daughter Ida, she found herself on a different journey – a dedicated search across two countries for the best possible medical and physiotherapy information and support she could find. Undiagnosed for eight years, it was in 2018 that Ida was offered whole exome sequencing and received a diagnosis of MEF2C. Since then, Maja has found a new motivation. Inspired by their long search and the support of other families met on this journey, she is determined to spread awareness of rare diseases