I am Ana Pataki (42) from Novi Sad, a sociologist and communication professional active in the field of rare diseases, health advocacy, and social development. I currently work as a Project Coordinator at the organization “Lil’ Brave One – Hrabriša,” which brings together families of children affected by rare neurotransmitter disorders and develops international collaboration with clinicians, researchers, and partner organizations. Through this work, I actively contribute to improving the quality of life of families, strengthening patient-driven research networks, and building a more connected community. I am also a content creator on social media and co-author of the “Rare and Share” podcast, where I help expand knowledge and connect experts, patients, and the wider public around topics related to rare diseases. I am currently a PhD candidate at the Faculty of Philosophy in Novi Sad, where my research explores the social dimensions of rare diseases and the experiences of families within the healthcare system. Through the HRL Program, I hope to further develop my skills in leadership, networking, and organizational growth in order to strengthen the capacity of my organization and contribute to creating sustainable solutions for families affected by rare diseases in the region.
