Society for Mucopolysaccharide Diseases

Society for Mucopolysaccharide Diseases

Charity information

Society for Mucopolysaccharide Diseases

MPS diseases are a group of 21 little-understood, life-limiting and cruel genetic conditions and their rarity means that families invariably feel despair and isolation as they face the almost incomprehensible anguish which follows a child’s conclusive diagnosis. The need for specialised information and advice on all aspects of living with MPS was identified in 1982 by parents experiencing these diseases within their own families. Realising that the extreme rarity of their children’s conditions made them the experts in managing and living with MPS, families began to acquire an extensive body of knowledge, capturing and sharing information and advice with other parents. Since then the Society has grown to become recognised world-wide for its knowledge and expertise in supporting all those affected by MPS, and aims to:

• support all children/young people affected by MPS, their families and other carers.
• raise understanding of MPS, both generally and among healthcare professionals.
• fund clinical and scientific research into treatments and cures for MPS conditions.