InNerMeD Croatian celebration of the Rare Disease Day
World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.
InNerMeD project also this year has welcomed this initiative and has been pleased to contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. In particular, thanks to a fruitful cooperation with the Croatian Alliance for Rare Diseases, InNerMeD could mark the International Day of rare diseases in Zagreb at the Preradovic Square (Flower Market). The Croatian Alliance for Rare Diseases is the umbrella organization that gathers 20 other non-profit organizations acting on behalf of patients with rare diseases, as well as more than 450 individual patients with rare diseases that do not have their own patient organization (e.g. MPS, Gaucher, Fabry, Pompe, Lafora, Marfan, Niemann-Pick, Porphyria). Its main objective is to provide quality medical and psychosocial care for people living with rare diseases, implementation and monitoring of the National Plan for Rare Diseases, recognition of rare disease patients at all levels of the health and social system, as well as education, research etc.
During the International Day of rare diseases, a big exhibition stand was arranged at the Preradovic Square and many people stopped at and visited the exhibition area giving support to those suffering from rare diseases. In particular, the Croatian Alliance for Rare Diseases organized the campaign “Hold for rare diseases”, aimed to collect as many photos of hugs as possible and to raise public awareness of rare diseases. InNerMeD poster was exposed during the whole exhibition and was presented by Professor Ljerka Cvitanovic-Sojat, who distributed also the InNerMeD leaflets. The main goal of this exhibition was to rain awareness on Rare diseases and gather as many hugs as possible to show support for people living with rare diseases.
The InNerMeD poster was also exposed on the 27th and 28th February 2015 during the postgraduate course “The Rare Diseases in Neurology”. Organized by the University of Osijek “Josip Juraj Strossmayer”, School of Medicine, Osijek, Department of Neurology University Hospital Center Osijek, Croatian Buro for Neurorehabilitation and Restorative Neurology. During the course, on Friday, the 27th of February 2015, Professor Ksenija Fumic, Ph. D. gave the lecture: “Biomarkers in lysosomal storage diseases – New methods for diagnosis of inborn errors of metabolism”. This talk contributed to spread awareness on Lysosomal storage diseases, a group of inherited neurometabolic diseases characterized by the fact that these multysistemic, progressive and devastating rare diseases often do not have main symptoms and therefore a complex and interdisciplinary collaboration in diagnosis and treatment is necessary.