Development of the Student Helpline – "Meet the Rare"
In 2025, our Section for Rare Diseases at the University of Zagreb School of Medicine continues its lecture series aimed at educating medical students about rare diagnoses and the specific needs of those affected. Each lecture in the series includes a presentation by a medical expert on a particular rare disease, followed by a patient’s personal…
Development of the Rare Disease Helpline – Educational Brochure "Rare Infotheque for Healthcare Professionals"
Radio Student recognized the importance of the educational brochure “Rare Infotheque for Healthcare Professionals,” created by students from the Student Line for Rare Diseases. The news about the brochure’s distribution and its availability on the website was featured in the “Hodalica” program, broadcast on January 30, 2025.
Development of the Rare Disease Helpline – Volunteer Activities
The Student Helpline, operated by our dedicated volunteers from the Student Section for Rare Diseases at the University of Zagreb School of Medicine, welcomes new volunteers each academic year. Volunteering involves a wide range of activities. Throughout our collaboration, in addition to answering countless medical inquiries, our volunteers have also prepared numerous expert articles…
Rare Disease Counseling Center – A Comprehensive Support System – Association Counseling
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...
Development of the Student Helpline – Student Conference on Rare Diseases "ZEBRA 2025"
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...
Rare Disease Counseling Center – A Comprehensive Support System – Rare Diagnosis Calendar
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...
Development of the Student Helpline – Brochure for Healthcare Professionals
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,...
Rare Disease Counseling Center – A Comprehensive Support System – Project "Little Wish, Big Happiness!"
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...
Rare Disease Counseling Center – A Comprehensive Support System – The Role of Psychologists in the Resource Center for Rare Diseases
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 – sustav sveobuhvatne podrške – Godišnji izvještaj o upitima
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….
Development of the Student Helpline
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...
Savjetovalište za rijetke bolesti – sustav sveobuhvatne podrške – Educentar
Na žalost, činjenica je da se oboljeli od rijetkih bolesti i njihove obitelji, zbog nedostatka informacija susreću s nerazumijevanjem, često i diskriminacijom, u školi, na radnom mjestu, u zajednici. S ciljem podizanja svijesti o njihovim potrebama, upravo u svakodnevnom kontaktu s okolinom, kroz edukacije učenika,…
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