The Alliance for Rare Diseases is dedicated to creating better conditions for individuals facing rare diseases and actively supports its member associations in various aspects of their activities. Through different initiatives, the Alliance focuses on providing support in areas that are crucial for improving quality of life...

On the occasion of the 2025 International Rare Disease Day, the Student Section for Rare Diseases of the University of Zagreb School of Medicine, in collaboration with the Croatian Alliance for Rare Diseases, is organizing the 6th Student Conference on Rare Diseases titled "ZEBRA 2025." The theme of this year’s conference is rare metabolic diseases, and numerous...

According to the reference portal for rare diseases, Orphanet, there are currently more than 6,400 rare diagnoses. These diseases, often unrecognized and insufficiently researched, require special attention and support in order to improve the quality of life of those affected and to enable better diagnosis and treatment. Rare diseases are...

In collaboration with the Student Section for Rare Diseases of the University of Zagreb School of Medicine, an educational and informational brochure titled "Rare Info Library for Healthcare Professionals" has been developed. The brochure contains information about rare diseases that is important for primary healthcare physicians, details about reference centers for rare diseases,...

The "Little Wish, Big Happiness!" project is a long-standing initiative that began as a student initiative aimed at raising awareness about the presence and diversity of rare diseases in our region. Its mission is to bring rare diagnoses closer to the public and foster a greater understanding of the needs of those affected, thereby contributing to the creation of...

Chronic diseases exhaust the psychological capacities of those affected, impact their close family members and surroundings, and often bring with them feelings of isolation and loneliness, sadness, fear, anger, worry about the future, a distorted self-image, and shame, which can lead to lowered mood, dissatisfaction with life, and...

Savjetovalište za rijetke bolesti (Hrvatska linija pomoći za rijetke bolesti) pokrenuta je 2011. godine i djeluje na području cijele Hrvatske. Na upite zaprimljene preko linije odgovara stručni tim Saveza: socijalna radnica, psihologinja i vanjski volonterski medicinski tim. U razdoblju od 1. siječnja 2024. do 31….

On Thursday, November 14, 2025, at 4:00 PM, a training session was held for both old and new volunteers of the Student Section for Rare Diseases at the University of Zagreb School of Medicine, at the Educational Center East of the Clinical Hospital Center Zagreb at Rebro. The goal of the training is to review the objectives and purpose of the Student Helpline project every year...

Unfortunately, the reality is that people affected by rare diseases and their families often face misunderstanding and even discrimination—at school, in the workplace, and within the community—due to a lack of information. To raise awareness about their needs, especially in everyday interactions with others, educational programs for students…

The Handbook on Rights provides a comprehensive overview of social rights related to individuals with rare diseases, with the aim of helping patients better understand their rights and the opportunities provided by law. It is important to emphasize that there are not the same rights for all individuals affected by...