Strengthening Healthcare Advocacy and Rare Disease Patient Engagement (SHARE-RD)

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.

As an organization committed to empowering patients to stand up for their rights and help others do the same, we are excited that over the next three years, we will have the opportunity to work closely with other families.

For all of us who are dealing with rare diseases—whether our own or that of a loved one—collaboration with healthcare professionals, the government, and other important stakeholders is crucial. We are aware that everyone has a role to play. However, only patients and their families have the unique perspective to see the full support system clearly and understand what works well and what needs improvement.

This is exactly where we see the role of patient advocates—improving the support system for patients. Over the next three years, together with our friends from NORBS and the LIPA association, we will be engaged in this new fight.