Croatia_Europlan – RD-ACTION : DATA AND POLICIES for rare diseases

The 3rd EUROPLAN National Conference took place on 7 November 2017 in Zagreb, Croatia. The National Alliance Rare Diseases Croatia was the organiser.

The focus of the conference was on “integrated care” for people living with rare diseases. The two specific themes addressed were Centres of Expertise for rare diseases and social services adapted to the needs of rare disease patients, emphasising the necessity of multidisciplinary care, raising awareness of rare diseases and efficient coordination of all relevant professionals (healthcare professionals, psychologists, social workers, teachers….) involved in the daily care of the patient. Some examples were presented, such as the Debra Resource Centre in Croatia as well as the NoRo Resource Centre in Romania. Besides, Croatia has appointed a Coordinator ( a medical doctor) for rare diseases in several hospitals, in charge of the global follow up of patients.

During the conference, important recommendations were made to improve the system and establish “integrated care” for patients.