Every eight days, a child is diagnosed with a Mucopolysaccharide (MPS) or related disease in the UK. These are genetic, life limiting diseases which cause progressive physical disability and, in many cases, severe neurological deterioration.
As the only charity supporting individuals and families affected by MPS and related diseases in the UK, we offer the specialist support, information and advocacy that our community needs, either to make informed decisions about treatment, education, benefits or it can be to offer a friendly, listening ear during times of crisis. Our team of qualified Support and Advocacy Workers help over 1,500 children, young people and adults through regular calls, emails and home visits across the UK. We also focus on funding and collaborating on innovative, world-class research that could make a positive impact on the lives of those affected by an MPS or related disease.
We put our community at the heart of what we do. Our vision is for all people affected by our diseases to live the lives they want and we know, together, we can transform lives through specialist knowledge, support, advocacy and research.