On September 6th to 8th, the Croatian Anderson Fabry Association organized the first regional meeting of Anderson-Fabry disease patients in Tuheljske toplice.
This significant event gathered patients, doctors and experts from Croatia and Slovenia, aiming to raise awareness of this rare genetic disorder and promote the exchange of medical knowledge and patient experiences.
The Croatian Anderson Fabry Association had the honor of hosting representatives from the Slovenian Anderson Fabry Association, as well as Dr. Bojan Vujkovac, one of the leading experts on Fabry disease in the region and the head of the Fabry Center in Slovenj Gradec. His vast experience and expertise added great value to the meeting, particularly in comparing healthcare systems for Fabry patients in Croatia and Slovenia.
The event served as a platform for sharing comprehensive medical information on the diagnosis, treatment, and daily challenges faced by patients. Presentations were delivered by Dr. Ivan Pećin, head of the Reference Center for Metabolic Diseases at Zagreb University Hospital, who provided insights into the latest methods for diagnosing and treating Fabry disease in Croatia. Dr. Kristina Selthofer Relatić, a cardiologist from Osijek, shared her experiences in managing the cardiovascular complications of Fabry disease.
Nurse Renata Jažić spoke about her role in patient care, emphasizing the importance of personalized care for each individual. Jadranka Brozd, president of the Croatian Scleroderma Association, contributed valuable perspectives by sharing her experience in leading an organization for rare diseases.
Through engaging and open discussions, participants identified key challenges faced by Fabry patients in both countries. The need for improved access to treatment and care in Croatia was highlighted, following the Slovenian model, which was praised as an example of good practice. It was concluded that increasing the number of members in the Croatian Anderson Fabry Association is crucial to ensuring better support, conditions, and visibility for this rare disease in society.
This important event was made possible thanks to the generous support of their partners, including Swixx BioPharma, Amicus Therapeutics, Takeda and the City of Našice, to whom they are deeply grateful for their assistance in making this gathering a success.
