Scientific progress in the treatment of rare diseases is both an opportunity to improve lives and a financial challenge given the high cost of therapies. As stressed by the EU Commission, part of the solution should come from increased competition and increased cost transparency, in order to limit excess profits in the sector. This column argues that these initiatives can be complemented by (i) requiring pharmaceutical companies to set up benefit corporation divisions for rare diseases, freeing management to accept ‘reasonable’ prices for their therapies, and (ii) centralizing at the EU level the purchases of rare disease therapies, as was successfully pursued in the case of Covid-19 vaccines.

By Mathias Dewatripont, Alain Fischer and Michel Goldman

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