Did you know…

The MPS Society is now over 30 years old! Since 1982 we have been supporting families affected by MPS, Fabry and related diseases, funding research and raising awareness.

Some of our achievements include leading international collaboration, collecting 33 years of data on MPS diseases, supporting specialist clinics and funding ground-breaking research, which included finding the MPSII Hunter gene.

One of the MPS Society’s key aims is SUPPORT. In 2015 our hard-working Advocacy Support Team made over 50 home visits, all over the UK and Ireland, to sufferers and their families, performed 15 school talks and attended over 45 meetings to discuss our members’ social care, housing and education needs.

About Us

The Society for Mucopolysaccharide Diseases (MPS Society) is the only registered UK charity providing professional support to individuals and families affected by MPS and related Lysosomal Storage Diseases throughout the UK.

The MPS Society was established in 1982 by our Chief Executive, Christine Lavery MBE after her son, Simon, passed away following a diagnosis of MPS II, Hunter disease. Since then, the MPS Society has developed into the leading provider of information and support for MPS and related diseases, working with medical professionals and scientists to meet our three aims:

  • To support families and carers and ensure all individuals with MPS and related diseases have access to best practice in diagnosis, treatment and care.
  • To fund and promote research into the causes, effects and treatments of these severely life-limiting diseases.
  • To increase public awareness of these rare conditions and campaign for change – to change the lives of children, adults and their families for the future.

Please visit our downloads and resources for more information.

Society for Mucopolysaccharide Diseases

  • MPS House
  • Repton Place
  • White Lion Road
  • Amersham
  • Buckinghamshire
  • HP7 9LP
  • UK

  Tel: 0345 389 9901
All Ireland Advocacy Officer: 077862 58336 or 02895 047779

  Fax: 0345 389 9902

Registered as a charity in England and Wales, Charity No. 1143472
Charity registered in Scotland, Charity No. SC041012
Registered company limited by guarantee in England and Wales, Company No. 7726882

Our Constitution

Our Constitution Information on everything from General Meetings to Powers and Duties of Trustees can be found in Our Consititution. Our Constitution

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