Life with a rare disease comes with a whole host of challenges for our community. Our team of Support Workers provide all our members with a network of support as well as expert guidance and information so they can thrive.
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Mucopolysaccharide (MPS), Fabry and related lysosomal diseases are a group of 27 rare, genetic diseases caused by a lack of certain enzymes. At the point of diagnosis, many parents are faced with the news that their child’s lifespan will be limited. There are around 1,200 individuals living with one of the 27 MPS, Fabry and related lysosomal diseases in the UK, there is no cure.
The MPS Society is the only registered UK charity providing professional support to individuals and families affected by MPS, Fabry and related lysosomal diseases. Members will be assigned one of our Support Workers who understands their diagnosis. They will receive a tailored information pack; are offered befriending links with others who have the same disease; are informed of the services we offer and our current online events; and signposted to relevant services and specialists as necessary.