Slovenia proposes public fund for rare disease treatments

The Slovenian government has approved a proposal for a public fund dedicated to the advanced treatment of rare diseases in children. The law aims to establish a sustainable financing mechanism for treatments that are medically justified but not yet covered by mandatory health insurance.

The fund is proposed to have an initial capital of 10 million euros. Primary funding will come from the unallocated portion of the one percent income tax, with an estimated annual inflow of 10 to 12 million euros. Additional revenue sources include donations, European funds, and voluntary partnerships with pharmaceutical and commercial companies.

However, the proposal has faced criticism from non-governmental organizations. CNVOS and Slovenian Philanthropy have raised concerns that diverting the unallocated income tax funds could deprive NGOs of existing financial support, as current year funds would be transferred to the new fund, potentially impacting existing contracts with non-profit organizations.