Our Position Paper

Our research consortium is very excited to announce that we published our position paper in the Orphanet Journal of Rare Diseases.

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Many rare disease patients worldwide struggle to access treatment, as these are often unavailable or too expensive. Pharmaceutical companies usually develop and market treatments in a highly standardized way. However, alternative ways are possible – and becoming more and more common.

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We see that many alternative methods of developing and marketing treatments for rare disease patients share two things. Firstly, these alternatives often involve different stakeholders, including ones that do not usually develop treatments (such as clinicians and patients). Secondly, these alternatives methods frequently prioritise their efforts towards achieving a ‘societal’ goal.

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We (a diverse social science research group from Brazil, Canada, France, and the Netherlands) propose to call these alternative ways ‘Social Pharmaceutical Innovation’, SPINs for short.

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In this position paper, we argue that policymakers and others should give SPINs more room to develop. To make this happen, we research what makes SPINs tick and what makes them flourish. We invite patients and patient organizations, researchers, industry, and policymakers to collaborate with us so that more rare disease patients can access treatments.

 

Read our position paper below: