ASUK is delighted to announce we are now on the UK Rare Disease Policy Board!
ASUK is involved to strive for improved services for all affected by rare conditions in the UK, ensuring everyones voice is heard. 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.
You can follow the link to read the full report
You may recognise someone on the front cover!
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 find out about the 51 commitments from the Rare Disease Strategy by following the link to the Rare Disease UK website: https://www.raredisease.org.uk/uk-strategy-for-rare-diseases
(Front cover of the report, pictured , kindly provided by Rare Disease UK/Josh Tucker.)