I established a National Steering Group to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and to be patient centred. The policy will operate over a 5 year period, take account of the EU Council Recommendation on Rare Diseases (2009) and define priority actions subject to resource availability. Similar plans are being drafted by individual countries across the EU, including in the UK. While no substantive contact has taken place in this context there has been some general discussion between my Department and officials in Northern Ireland on the progress of the rare disease strategies.
In relation to the Directive on the application of patients' rights in cross border healthcare, there has also been some preliminary contact between the North’s Department of Health and my Department.