Patient Advocacy in Cell and Gene Therapies - EU edition MasterClass

Bojana’s personal story and fight for her daughter’s life introduced her to the world of rare diseases. 10 years ago she lost her daughter Zoja to a very rare neurodegenerative disease called Batten disease. She was only 9 years old. Today, in her honour there is Zoya’s law in Serbia that makes it possible to diagnose genetic and rare diseases in the short term - which was not the case before this law. Zoya’s law was adopted unanimously in 2015. In just more then 8 years, it has saved more than 4000 lives. Bojana has presented Zoya’s law in the United Nations in New York as well as in the EU Parliament in Brussels and at more than 150 international conferences. She was awarded by the European Organisation for rare disease Eurordis with Black Pearl Award in 2019. For more than 15 years she has been the president of the Patient Organisation for Children with Rare Diseases in Serbia “LIFE”, which provides support to children who suffer from rare diseases and their families. She is Founder and chief editor of the first and only journal about rare diseases in the Balkan region named “Word for LIFE” and in 2017, she established the first rare disease Database in the Balkans. Bojana’s great passion is clinical research for rare diseases and she is a strong advocate of including patient organizations and patients’ voice in drug development processes as early as possible. As Kao Director of Patient Advocacy Strategy, she is a team member of the Center for Rare Diseases in the global CRO company ICON. By education she is a Chemist and Embryologist who specializes in pre-implantation genetic testing helping families to have healthy children.