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...

The Rare Disease Counseling Service (Croatian Helpline for Rare Diseases) was launched in 2011 and operates across the entire territory of Croatia. Inquiries received through the helpline are handled by the Alliance’s expert team: a social worker, a psychologist, and an external volunteer medical team.

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...

Rare diseases often bring challenges in everyday life—not only regarding diagnosis and treatment or securing rights but also within the social environment. Therefore, we aim to provide patients the opportunity to connect with others who share the same diagnosis, giving them a chance to exchange experiences, information, and advice…

The Student Helpline for Rare Diseases project was launched in 2014. Since then, hundreds of volunteers—now young doctors—have been involved. Each year, new young people join the group, bringing fresh ideas that expand activities and improve the quality of the helpline’s work.

October is the month in which we remind the general public about liver diseases, as well as the importance of liver health, prevention, and early detection of various conditions (Liver Awareness Month). The primary organizer of this campaign was initially the American Liver Foundation…

Social workers play a key role in providing support to individuals affected by rare diseases and their families. They help facilitate access to necessary resources, assist in navigating complex administrative processes, and provide the emotional support that is often essential during difficult times. If you are not satisfied…

On the afternoon of September 19, a meeting was held for patients from the Balkan region who suffer from rare metabolic diseases or are parents of children affected by rare metabolic diseases. The meeting was attended by Dr. Tamara Žigman, MD, PhD, a pediatric specialist with a subspecialization in medical…

On September 19, another Regional Training for Associations was held at the Zonar Hotel in Zagreb. This training was intended for association leaders from the Balkan region who provide support to individuals affected by rare diseases and their families. The previous training took place in 2016 in Kaštel Kambelovac. Thirty participants attended the session.