by Bojana Mirosavljevic, Ergomed Patient Engagement Officer
As a young Serbian Chemist, dedicated to my family and my career, my path was clear, walking through a life full of planning and hope. But life had other plans for me.
In 2004, my daughter Zoya was born; nothing hinted at the misfortune that awaited us. A few months after turning three, Zoya had her first epileptic seizure; getting the proper support and diagnosis was impossible. We battled through the years with her terrible symptoms; she stopped walking, talking, and lost vision. After much effort, our Zoya was later diagnosed with a very rare neurodegenerative disease known as Batten Disease.
Batten Disease is the common name for a broad class of rare, fatal, inherited nervous system disorders. There is no worse agony than watching your child suffer and knowing there is nothing you can do to save them. Sadly, Zoya lost her battle in 2013, just one month before her ninth birthday.
My world had disappeared, and my only motivation was to prevent anyone from going through the sadness and pain we went through every day. In 2010, I took a step forward and founded an organization called “Life”. “Life” supports families of sick children by supplying medical aids, therapies, and education to patients and doctors alike.
We worked on initiating and supporting the adoption of Zoya’s Law in Serbia, a law making it possible to diagnose rare and genetic conditions early on. We know that time is crucial in rare diseases, and a timely diagnosis can save lives. Everyone should have the right to a diagnosis. Everyone should have a right to fight for their life or their loved one’s life.
Zoya’s Law passed in January 2015—the only Law ever adopted unanimously in the Serbian Parliament. Since then, it is believed to have saved more than 3,000 lives.
Later, I joined Ergomed Clinical Research as their Patient Engagement Officer. For me, it is clear and fundamental to the success of research and trials that the patient is involved from the very start. My role at Ergomed gives me the privilege to improve a patient’s health and to ensure that the patient is at the forefront of thinking when designing and operationalizing clinical research protocols. It is this commitment to the patient which sets Ergomed Clinical Research apart.
I am committed to ensuring patients are included in the decision-making process from the start and that the patient perspective is always clear and considered. The relationship between the patient and the research team is significant and integrates the patient’s voice to improve the value of the research and better inform the patient, thereby enhancing patient recruitment and retention.
If you have any questions for Bojana, please feel free to reach her at email@example.com