Patient organisations play an increasingly crucial role in the pharmaceutical sector, yet their impact on innovation remains unexplored. In this article the impact of patient organisations on R&D activity in the context of rare diseases in Europe using a proprietary dataset that maps clinical trials from discovery to phase III across 29 countries, 1893 indications, and 30 years (1990-2019) is estimated. By applying difference-in-differences and event study methodologies to a panel of 1,646,910 unique R&D observations, is found that country-indication pairs with at least one operating patient organisation have a higher rate of R&D activity compared to those without, with stronger effect in more prevalent rare diseases compared to ultra-rare conditions. This article suggests that patient organisations play an important role in steering R&D efforts in rare diseases. Further research is needed to better understand mechanisms driving this effect and the potential impact of patient organisations on existing health inequities. Read the full article here.
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