Collaboration for impact and societal value

The development of therapies for rare diseases and drug repurposing within academia requires new ways of working, with societal value playing a central role. At RARE-NL, we adopt a collaborative model that integrates financial and societal value. This includes:

Transparency and fair pricing
Costs, investments, and pricing are made fully transparent. Prices are based on actual costs plus a reasonable profit margin. Any profits are reinvested into a revolving fund to finance new projects.

Sustainable risk-sharing
All parties involved share risks through innovative project structures where they hold joint ownership. This approach enables flexibility and customization while seeking external funding to fairly distribute financial burdens.

Accessibility
All parties commit to ensuring that treatments are made available to patients. Developments are not halted arbitrarily if there is evidence of patient benefit and a positive business case.

Societal responsibility in practice
RARE-NL focuses on public-private partnerships that foster collaboration at all stages of developmentā€”from fundamental research to market introduction. Governance is managed by stakeholders closely involved in the project, such as academic researchers. Furthermore, data and knowledge are shared equitably, in compliance with GDPR and FAIR principles, ensuring that all stakeholders can contribute to the process.