APPG Report on UK Strategy for Rare Diseases in England
The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions published a report yesterday looking at the implementation of the UK Strategy for Rare Diseases in England. The APPG has found that the Strategy is not being effectively implemented in England. England is the only country in the United Kingdom where an implementation plan has not been developed by the department of health, and this has resulted in many patients being unable to access appropriate treatment, coordinated care, or information about their condition.
The report calls on the Department of Health to develop an implementation plan to improve services for patients and families affected by rare conditions.
The APPG and Rare Disease UK would like to thank the 300 patients, family members, carers, clinicians, patient representatives and industry who submitted evidence as part of the APPG’s inquiry into the implementation of the UK Strategy for Rare Diseases in England.