In 2013, the ever anticipated Rare Disease Strategy was revealed with 51 commitments to ensure no matter where you live you should receive high quality care, treatment and support, which is evidence based.
With an estimated 3.5 million people affected by a rare disease at some point in their lives, this is ensuring all people can access the treatment and support they need. The 51 commitments also include the need for research to progress in this field.
All areas have agreed to implement this by 2020.
Whilst Scotland, Wales and Northern Ireland are coordinating activities to implement the strategy. The Department of Health in England has no coordinated plan for England.
In November 2016, The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions met with representatives from the Department of Health (DH), Public Health England and the National Institute for Health Research (NIHR) as part of its inquiry into the implementation of the UK Strategy for Rare Diseases in England. This meeting was to raise concerns and find a way forward!
Please follow the link to Rare Disease UK to find out more