Rare Diseases Croatia City: Zagreb Phone : +38512441393
Rare Diseases Croatia is the umbrella organization that gathers 23 other non-profit organizations acting on behalf of patients with rare diseases, as well as more than 700 individual patients with rare diseases that don’t have their own patient organization (e.g. MPS, Gaucher, Fabry, Pompe, Lafora, Marfan, Niemann-Pick, Porphyria …). In total, there are more than 400 diagnoses registered in our association. Our 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.
The main projects of the Alliance are: Croatian Help Line for Rare Diseases, Orphanet Croatia, RareConnect, monitoring of the National Plan for Rare Diseases and patient advocacy.