Society for Mucopolysaccharide Diseases

Who we are

Founded in 1982, the Society for Mucopolysaccharide and related Lysosomal Storage Diseases (the MPS Society) is the only national charity specialising in 25 very rare MPS and related LSDs in the UK. It represents and supports over 1,250 children and adults suffering from these diseases, their families, carers and professionals. The MPS Society aims to: Provide support by offering a range of practical services and a network for those affected by MPS and related diseases; Promote research into the development of treatment for MPS and related diseases; Raise awareness of these diseases

• Our Vision - A world where all children and adults affected by these diseases is no more Our Mission All children and adults affected by these diseases: • Can be treated, as effective therapies for each disease continue to be developed • Have equitable access to state-of-the-art clinical management and therapy • Are active members of society reaching their full potential • See pioneering gene therapy research offer a cure for these devastating diseases
• Our Purpose - To ensure that everyone affected by these diseases has access to expert clinical management and treatment, access to reimbursed therapies, advocacy support, information and advice. The MPS Society achieves this by working in partnership with affected children and adults, their families, caregivers health and social care professionals • To play a leading role with clinicians, scientists and academics in initiating and funding innovative research projects which may have therapeutic benefit for those affected by MPS and related diseases
• Our Values - We embrace diversity, respecting and including all those affected with these diseases, and responding to their individual needs • We promote self-determination by empowering individuals and upholding their rights • We recognise the importance of personal fulfilment for each person affected by these diseases by seeking and promoting opportunities for them, and their family members, in order to help them achieve their full potential • We act with integrity and transparency in providing an equitable support service • We continuously seek to improve the quality of our services by learning, consulting and reflecting on our actions