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Behind many people living with a rare disease is a network of family members, friends and others helping to manage their care. Parents learn the clinical language of unfamiliar conditions. Partners manage arrangements and travel for appointments. Friends provide practical and emotional support. Informal carers become advocates, administrators and sources of specialist knowledge while balancing other everyday responsibilities.

Unpaid care is not a marginal issue in the UK. Around 8.9 million adults provided unpaid care between 2023 and 2025. Working-age unpaid carers were less likely to be in paid employment – 59 per cent were in paid employment, compared with 67 per cent of working-age adults who were not carers. This fell to just 35 per cent among those caring for more than 35 hours a week. Women were also 29 per cent more likely than men to provide unpaid care.…