Savez za rijetke bolesti

Founded in 2022, Savez za rijetke bolesti is a non-profit network based in Sarajevo, Bosnia and Herzegovina working on health, human rights, disability.

Savez za rijetke bolesti is a non-governmental, non-profit, independent and voluntary federation of associations from the Federation of Bosnia and Herzegovina. Founded in January 2022, it brings together associations of people living with rare diseases and works to advance their rights and interests. Its stated aims include networking organisations and people affected by rare diseases, collecting and sharing knowledge and good practice, and engaging with authorities to ensure equal access to social, employment, education and recreation for people living with rare diseases. Membership is free, and the federation reports connecting over 500 affected individuals and family members and more than 20 non-profit organisations. Its member associations include groups for specific conditions such as Dravet syndrome, phenylketonuria, muscular dystrophy and Williams-Beuren syndrome. The organisation runs an information centre, publishes educational materials and guides, and takes part in public consultations on the rare diseases programme for the Federation of BiH.