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.

Patient organizations for rare diseases: Lil’ Brave One - Hrabriša, NORBS, and LIPA Join Forces in a New Initiative: Patients and Their Families as Advocates for Their Rights

Informed and educated patients and their families are the best allies in the fight against rare diseases. These days, together with NORBS and the LIPA association, and with support from the EU, we are launching a new project with precisely that goal – to increase patient engagement in advocating for their rights and position.

On May 12, 2025, we organized an opening conference at the EU House in Belgrade, where we presented our plans to the public. Our goal is to educate and inform patients, especially the families of patients, on how to become advocates for their own rights and the rights of their family members.

Connecting the Network: From basic research and clinical phenotypes to patient voice

16th  May 2025, Zagreb, Croatia

On Friday, May 16, Zagreb will host some of the most prominent researchers and Health Care Professionals in the field of rare neurotransmitter diseases (RND). The RND Researchers’ Forum is an international conference that will bring together specialists and experts from across Europe — including Croatia, Serbia, Germany, Switzerland, Italy, Spain, and Bulgaria.

This is the first international event organized by patient organization “Lil’ Brave One (Hrabrisa)” as part of a project supported by the Chan Zuckerberg Initiative, Rare As One program.