The 7th National Conference on Rare Diseases with International Participation was held in Zagreb, at Hotel Academia, on Saturday, June 10, 2023, under the patronage of the City of Zagreb and the Ministry of Health of the Republic of Croatia

Among the many participants—including representatives of institutions, patient groups, and associations advocating for people with rare diseases, as well as experts in the field—the conference was also attended by Dunja Skoko Poljak, M.D. Head of the Public Health and Healthcare Protection Sector, representing the Ministry of Health of the Republic of Croatia. Anica Ježić, Head of the Sector for the Development and Improvement of Social Services, representing the Ministry of Labor, Pension System, Family and Social Policy of the Republic of Croatia, and  Šani Samardžić, M.D., Senior Expert Advisor in the City Office for Social Protection, Health, Veterans, and Persons with Disabilities, representing the City of Zagreb.

The conference was opened by Sara BajloVice President of the Croatian Alliance for Rare Diseases, provided an introduction to the theme of the conference, while Ms. Mladenka Šarić moderated the conference and organized the panel discussions.

As part of the program, three panel discussions were held, titled:

RARE DISEASES IN CROATIA – STATE ANALYSIS AND COLLABORATION

RARE DISEASES – HOLISTIC APPROACH TO CARE

RARE DISEASES – STATUS ANALYSIS IN THE REGION

After the panel and lectures by our colleagues from the European Organization for Rare Diseases (EURORDIS), a special segment called 'Words of the Patients' was held, organized by member associations. Parents of children and individuals living with Rett syndrome, Cystic Fibrosis, Fabry disease, and Spinal Muscular Atrophy shared their experiences of living with rare diseases.

Medical students, our long-time volunteers, then introduced the Student Helpline for Rare Diseases.

At the end of the program, the Elective Assembly of the Croatian Alliance for Rare Diseases was held, during which new leadership was elected.

Sara Bajlo was elected as the President of the Alliance, and the members of the Board of Directors are Jadranka Brozd, Katarina Čizmin, Kornelije Juranić, Josip Stojić, Vana Vukić, and Jasenka Wagner Kostadinović. The new members of the Supervisory Board of the Alliance are Miranda Kokotović, Marina Lozančić, and Ida Mairković Knaus.