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.

Amyloidosis is a chronic systemic disease caused by the accumulation of abnormally folded proteins. To date, more than 30 proteins capable of forming amyloid deposits have been described, including proteins essential for normal body function as well as those found only in pathological conditions. (1) In transthyretin amyloidosis, the tetramer…

Presentation of the Resource Center’s Services – specialized services we continuously provide to the citizens of Zagreb, and as an umbrella organization, also to 250,000 patients across Croatia. The Role of the Social Worker in the Rare Disease Resource Center

Students of the University of Zagreb School of Medicine who volunteer with the Croatian Alliance for Rare Diseases have contributed to our work for many years and help ensure continuity in service provision. Through their motivation for the field of rare diseases and their daily engagement on the helpline, as well as with new ideas, they have contributed to raising…

Mjesec kolovoz je mjesec svjesnosti o spinalnoj mišićnoj atrofiji. Proširimo svijest i podržimo oboljele od SMA. Spinalna mišićna atrofija je genetski poremećaj koji utječe na živote mnogih pojedinaca i njihovih obitelji, ali bitno je razumjeti da danas postoji rana dijagnostika i dostupne su nove terapije…

Dravetov sindrom, poznat i kao teška mioklona epilepsija dječje dobi, što dolazi od engl. Severe myoclonic epilepsy of infancy (SMEI), rijetki je i teški oblik epilepsije koji počinje u prvoj godini života I nažalost pogađa najvulnerabilniju skupinu pacijenata, djecu. Karakteriziraju ga produljeni i česti napadaji,…