We are pleased to announce that The Department of Health and Social Care and NHS England have published plans to implement the UK Strategy for Rare Diseases. You can view these plans HERE
This is the implementation of the 51 commitments of the strategy for Rare Diseases in England. You can find out more about what this means for people affected by Rare Diseases and also how we have been involved in the development of this through the Rare Disease Policy Board below:
ASUK is on the UK Rare Disease Policy Board to help improve services for people with Alström Syndrome and others affected by rare conditions in the UK. The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions published a report calling on the Department of Health to implement the Strategy for Rare Diseases and improve services for people affected by rare conditions.
The work of the UK Rare Disease Policy Board will include the continuing development of the Strategy for Rare Diseases, ensuring the 51 commitments from the strategy are being met. The UK Strategy for Rare Diseases highlights the way we can improve the lives of all those with rare diseases in the UK by 2020. It details 51 commitments and each part of the UK will take action and develop plans to implement the strategy, working together to pool resources, knowledge and experience where possible.
You can read the full report and find out about the 51 commitments from the Rare Disease Strategy via the Rare Disease UK website: https://www.raredisease.org.uk/uk-strategy-for-rare-diseases
(Front cover of the report, picture kindly provided by Rare Disease UK/Josh Tucker.)