The Funding Support for Rare Disease Research: Raising Awareness and Increasing Transparency report …
Rare Disease UK’s (RDUK) report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy describes the obstacles preventing patients and families being able to access the high quality services, treatment, care and support that would ensure they benefit from optimum health outcomes.
The report sets out recommendations developed in collaboration with a broad range of stakeholders in England and across the UK to address these issues. It demonstrates how lives of patients and families can be improved, and NHS resources optimised, by taking some creative approaches and by building on the innovative ways of service planning and delivery that are already proving successful in the UK.
RDUK campaigned for the recommendation in the report to form the basis of an effective strategy for rare diseases. The UK Strategy for Rare Diseases was subsequently published in 2013.