Ivana Badnjarevic

Biography

Ivana Badnjarevic is an engineer by profession and dedicated patient advocate by calling, specializing in rare diseases, with a particular focus on rare neurotransmitter disorders. Motivated by her personal experience as a mother of a daughter diagnosed with tyrosine hydroxylase deficiency, Ivana founded the patient association Lil’ Brave One (Hrabrisa) in 2016. Through this organization, she provides support, guidance, and resources to families navigating the complex challenges of rare neurological conditions.

Ivana holds certifications as an Expert Patient Advocate from both EURORDIS and EUPATI, reflecting her commitment to advancing patient education, empowerment, and engagement in research and healthcare decision-making. She actively collaborates with medical professionals, researchers, and policymakers to improve diagnosis, treatment access, and quality of life for affected families.

As a member of the National Organization for Rare Diseases of Serbia NORBS, European organization EURORDIS, and the Executive Board of the iNTD International Working Group on Neurotransmitter Related Disorders, Ivana contributes to initiatives that raise awareness of rare diseases, advocate for equitable healthcare access, and foster community among patients and caregivers on both the national and international levels. Under her leadership, Lil’ Brave One has grown into a recognized platform offering educational programs, psychosocial support, and opportunities for patients to participate in research and advocacy.

Ivana combines her technical expertise as an engineer with her advocacy experience to bridge gaps between the medical, research, and patient communities. Her work emphasizes collaboration, empowerment, and the importance of patient voices in shaping healthcare policies and research priorities.

Passionate, empathetic, and results-oriented, Ivana continues to inspire and support families affected by rare neurotransmitter disorders, while working toward systemic improvements in rare disease care and research both in Serbia and internationally.