About

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
  mps@mpssociety.org.uk

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

Who we are

Who we are The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK. Our Trustees Our Board of Trustees currently has 7 members. Trustees

Our main achievements

Our main achievements Pioneering Advocacy Support Service The seeds of the MPS Advocacy Support Service so acclaimed today were sown over 30 years ago when the Trustees recognised that befriending and information whilst important were not going to make the

Services we provide

Services we provide   We provide a range of support services for our members and their families, which includes: An individual needs-led Advocacy Support Service Support, information and advice in relation to: housing, education, benefits, independent living, employment, transition, medical management

MPS House

MPS House MPS House is a national source of authoritative advice and information, a place where learning and teaching about MPS and Related Lysosomal Storage Diseases can be shared, and a focal point for the UK-wide MPS Society. The first

Working Collaboratively

Working Collaboratively What are LSD’s? Lysosomal storage disorders (LSDs) are a group of approximately 50 rare inherited metabolic disorders that result from defects in lysosomal function. Lysosomal storage disorders result when a specific organelle in the body’s cells – the

How we first began

How we first began The Society for Mucopolysaccharide Diseases was founded in May 1982. It had only 40 families spread throughout the UK and the support provided was on a voluntary basis. This changed and in 1983 the first ever

Our Employees

  Bob Stevens Group Chief Executive Bob Stevens joined the MPS Society in May 2017 as Head of Operations & Governance. After a successful career in the private sector and following the diagnosis of his sons Oliver and Sam with

Our Accounts & Reports

Our Accounts & Reports If you would like to know more about what the MPS Society does, its staff and trustees, and its finances, you can download our Annual Review and Accounts, both past and present here. Report of the

Our Trustees

James Garthwaite – Acting Chair James first became involved with the Society in 1996 when his two sons, Tom and Louis, were diagnosed with MPS II, Hunters Syndrome. They have both been on enzyme replacement therapy since 2004, transforming their

Our Policies

Policy statement The Society for Mucopolysaccharide Diseases (MPS Society) by adopting best practice across all aspects of its role and activities is constantly seeking initiatives which add value to its members, supporter and the wider MPS community. The MPS Society

Our Donor & Fundraiser Promise

The Society for Mucopolysaccharide Diseases is committed to fundraising in an honest and transparent way.  In giving a voice to children and adults with 25 ultra-rare diseases means we are completely reliant on the goodwill and generosity of our supporters and donors

Our Strategy

Our Strategy “The MPS Society has achieved a worldwide reputation for its pioneering advocacy support activities and its contribution to the development of treatments for ultra-orphan diseases.” Christine Lavery, Founder and Chief Executive Officer In 2017 we will be celebrating