Following Rishi Sunak's Budget speech today (11 March 2020) Bob Stevens, chief executive of MPS Society, has released the following statement.
The MPS Society was disappointed that today’s Budget contained no additional funding for people with rare disease.
Today’s Budget presented the UK government with the ideal opportunity to support the three million people in the UK who were born with rare disease and who have to live with the adverse affects of these conditions on their health. The government’s Strategy for Rare Diseases aims to promote equity of access to treatment for some of the most vulnerable and marginalised people within British society. The Chancellor could have used the Budget to realise the goals of this strategy. Sadly, he failed to capitalise on this important opportunity. If we don’t take action and provide proper levels of funding for rare diseases, it will hinder access to treatment, which in turn will have a detrimental impact on the quality of life for those with ultra-rare disease and their families. As the UK Strategy for Rare Disease states, between six to eight thousand rare diseases have been discovered, approximately 80% of which are of genetic origin. Despite being described as ‘rare’, collectively rare diseases affect the lives of around 3 million people in the UK. Therefore, they are often termed ‘individually rare, collectively common’. The MPS Society supports individuals affected by 25 rare lysosomal storage diseases. This includes the seven Mucopolysaccharide (MPS) diseases, Fabry and related diseases such as Mucolipidosis (ML), LAL D, GM 1 Gangliosidosis and more. These diseases are metabolic disorders where there is a problem with lysosomal function. These genetic conditions cause a range of complex difficulties and we provide vital support to the whole family for as long as they need it. We also raise money and awareness of these conditions through fundraising, information, research and support.