The ongoing COVID-19 pandemic has focused worldwide attention on the global healthcare system and it presents challenges to addressing rare diseases, but also opportunities. On one hand, it has meant delays in diagnosis and treatment, which will cost lives; innovation funding has been diverted from rare disease research, and the economic impact may limit future expenditure on innovation and drug access. On the other hand, the pandemic has underscored the importance of healthcare system strength and resilience.
It has emphasised the need to spend resources wisely – in the best interests of patients and populations. It has forced new ways of working and fostered collaboration between nations, between all stakeholders in healthcare, be they public or private. It has driven fast-track innovation and changed the regulatory landscape; encouraged data sharing and transparency, and arguably made policymakers more accountable for health outcomes. It is now critical to prioritise patients with rare diseases who are amongst the most vulnerable to COVID -19, both directly and indirectly.
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