My three wishes for rare diseases are:
- It’s difficult to pick just 3! People living with rare conditions should have equal opportunities to access health and social care, including participating in relevant clinical trials across the UK.
- More ring-fenced rare disease research funding with a focus on supporting UK-wide infrastructure, improving diagnosis, evaluating the impact of rare diseases, and developing therapeutics.
- All rare disease research should have effective PPIE and EDI embedded from design through to final delivery with persons living with rare conditions as part of core teams.