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Public and Patient Involvement and Engagement (PPIE) refers to the active partnership between patients, carers, the public, and researchers.
ATMPs are medicines which could offer new treatments for rare diseases.
National Mirror Groups bring national needs and examples of good practice into ERDERA’s annual work plans, share ERDERA outputs with organisations and communities at country level, and enable direct peer-to-peer learning between countries.
When it comes to rare diseases, more than 70% have a genetic origin. To truly understand these conditions—and find ways to treat them—we need to start at the root: our DNA.
Significant health inequities pose challenges for those living with a rare disease