Croatian Society for Rare Diseases is a non-profit organization established with the goal to improve the lives of patients living with rare diseases. The Society has been  continuing the work of similar Societies dealing with specific diseases or group of rare diseses. The first organisation -  Croatian Society for Mucopolysaccharidoses was founded in 2001., then renaimed in 2003. to Croatian Society for Inhereted Metabolic Diseases. At the end of 2006. this organisation was expanded to our umbrella organisation for rare diseases which has been the primary civil rights protector and promotor for all rare disease patients in Croatia.

Membership in of our organization includes individuals suffering from rare diseases but also other non-profit organizations solving the particular problems of those affected by rare diseases. The following organizations have joined our Society: Association for Persons with Prader-Willi Syndrome Croatia, Croatian Organization for Cystic Fibrosis, DEBRA Croatia, Cancer patient association "Za novi dan", Association to help children and families faced with malignant diseases "Krijesnica", Croatian Hemophilia Society, Association of patients with disabilities Krizevci, Croatian association of people with scleroderma, Association suffering from collagenosis, Association to help those suffering from Phenylketonuria and Croatian Organization for Osteogenesis Imperfecta.

While these organizations have worked for years on finding solutions for patients with specific diagnosis, by working together as one network for rare diseases we are able to achieve quality of care and equality of rights for ALL patients living with rare diseases. It has become evident that only a strong cooperation between our civil rights organizations and their active involvement in the descision making can make a difference, because as we all now, the difficulties of living with a rare disease are many and complex. This situation is not one that a family can face on their own.