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Since 2014, we've invited stakeholders from across the rare disease community to this informal networking event. Young people speak about their experiences of living with a rare disease, and patient advocates, researchers and health professionals talk about working in the field. Read on for highligh...

Our updated report focuses on developments to the UK research landscape - and areas where more work needs to be done.

Our Patron, Her Royal Highness the Princess Royal, attended and spoke at a reception this month to mark the establishment of this fund.