Lil`` Brave One (Hrabrisa) in the United States: Building a Network for Neurotransmitter Disease Research

The story of children in Serbia living with ultra-rare neurotransmitter diseases (RNDs) reached Las Vegas this May 2025, thanks to the patient organization Hrabriša – Lil’ Brave One. 

The organization focuses on improving the lives of children affected by this group of rare disorders. It has become the only patient group from Southeast Europe to join the Rare As One network, supported by the Chan Zuckerberg Initiative (CZI).

With this support, Lil’ Brave One (Hrabrisa) is working to develop a cross-border network of researchers and clinicians, experts in these still largely unknown conditions.

 

At the end of May 2025, Lil’ Brave One (Hrabrisa) representatives attended the "Science in Society 2025", an annual Rare As One network meeting in Las Vegas. The team included Ivana Badnjarević, president of the organization/project lead on this project, and Dr. Galina Stevanović, Scientific Advisory Borad member, a child neurologist at the Clinic for Psychiatry and Neurology for Children and Youth in Belgrade.

“Our meetings with patient organizations from across the world confirmed what we already suspected—families everywhere face similar challenges. For us, it is essential to strengthen collaboration between scientists and clinicians, and to involve families in shaping diagnostic and treatment guidelines. Informed and engaged families can make a real difference,” said Ivana Badnjarevic.

She also emphasized the importance of Dr. Stevanovic’s presence at the event, noting that as a physician from a state-run reference clinic for rare neurotransmitter diseases, she had the opportunity to connect with international peers and learn directly from practices in more developed healthcare systems.

“Open and constructive dialogue with other organizations was one of the most valuable parts of this meeting. Being part of a global network reminds us that we are not alone—and that progress comes more effectively when we work together,” Badnjarevic added.

Lil` Brave One (Hrabrisa), founded nearly a decade ago by parents of children with rare neurotransmitter disorders, aims to connect patients and medical professionals. 

The organization believes that patient experience is an essential contribution to scientific research.

Through its collaboration with the Chan Zuckerberg Initiative, Hrabriša now has the opportunity to strengthen relationships with healthcare professionals, researchers, and families beyond Serbia and the region—and to make sure their voice is heard on the global stage.