Rare Disease UK will be holding a reception in Wales this evening to mark Rare Disease Day 2014. The event, which will be attended by representatives from the Genomics Policy Unit, University of South Wales, will be held at the Senedd in Cardiff Bay and hosted by Rebecca Evans, Assembly Member for Mid and West Wales. This year the event will focus on the importance of implementing the UK Strategy for Rare Diseases which was launched on 22nd November 2013. More information on the UK Strategy is available here.
Key features of the Strategy include:
• a clear personal care plan for every patient that brings together health and care services, with more support for them and their families
• help for specialised clinical centres to offer the best care and support
• better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment
• promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases
To achieve the UK-wide vision for rare diseases, there are 51 recommendations which all four countries of the UK have committed themselves to. The full UK Rare Diseases strategy document can be found here.