Patient and Public Involvement and Engagement (PPIE)
Example organisations in this function
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LifeArc
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Manchester Rare Conditions Centre (MRCC)
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Glasgow Office for Rare Conditions
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Birmingham University Centre for Rare Disease Studies
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Rare Revolution
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Rare Disease campaign
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Jeans for Genes
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Health Data Research UK (HDR UK)
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Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS)
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Congenital Anomaly Register and Information Service (CARIS)