Rare diseases remain one of the largest areas of unmet need in global health, affecting more than 300 million people worldwide. When families and caregivers are included, the circle of direct impact expands to more than 1 billion people, resulting in immense human and economic costs across societies and healthcare systems. The challenge is compounded by a scarcity of real-world evidence to support the search for new treatments, disparities in access and affordability of diagnosis, treatment and care, and a lack of knowledge sharing that leads to duplication of efforts to address the disease burden.

The WHO Rare Disease Resolution of May 2025, and the 10-year Action Plan to follow in 2028 is a potential gamechanger in efforts to address the multifaceted challenges of rare diseases. Recognising rare diseases for the first time as a global health priority, the resolution sets out measurable targets to guide progress towards equity, inclusion and access to care for all affected individuals. Delivering on ambition, however, will be a challenge for policy makers at a time when many national rare disease strategies remain in early stages of development, budgets are constrained, and the call for international collaboration hits the buffers of growing protectionism. Further progress will require sustainable funding models that recognise the value of rare disease innovation as a catalyst for stronger and more equitable health systems worldwide.

This Financial Times Digital Dialogue, taking place in partnership with Biogen ahead of the first anniversary of the WHO Rare Diseases Resolution, will bring together policy makers, healthcare professionals and patient representatives to discuss practical actions to translate global ambition into local change. Speakers will discuss opportunities for strengthening rare disease systems, ensuring that solutions also take account of the longer-term needs of patients as medical advances lead to longer and better lives.

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