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.

In September 2023 Laki promoted Lil' Brave One in Barcelona, where he was admitted to the department for rare neurometabolic diseases of the San Joan de Deu SJD Children's Hospital, for additional diagnostic procedures. He was seen by experts for rare neurometabolic diseases.