The latest edition of the Genetic Alliance Newsleter has just been published.
The main article is about the shape of the UK Strategy for Rare Diseases. As a high level strategic document for the whole of the UK it will not contain too many details about how improved services and support will be delivered on the ground. This is the responsibility of the NHS in each of the four countries of the UK, but it will provide a series of yardsticks against which the implementation strategies can be measured.
Headlines in the plan include better access to diagnosis, improved information to patients, more and better rare disease research, greater patient engagement and empowerment and a commitment to reconvene the stakeholder group set up to support the development of the plan as a monitoring group; the group will have a duty to report to ministers on progress every two years.
Read the Newsletter at http://www.geneticalliance.org.uk/docs/news/autumn-newsletter-2013.pdf