The MPS Society was founded in May 1982. It had only 40 families spread throughout the UK. Its expertise was old fashioned and centralised within the London area. The only treatment option available at the time was palliative care. The support provided was on a voluntary basis. Not only was there no lay information on MPS diseases there was no partnership working. This changed and in 1983 the first ever patient meeting was held. In 1991 the MPS Society opened its first office and individual advocacy work started. In 1993 we appointed a chief executive and the work of the Society has grown and grown. We proudly opened MPS a National Information Centre for MPS and Related Disease in January 2006.
Our aims and objectives
- to provide support to individuals affected by Mucopolysaccharide and related diseases, their families and the professionals who care for them
- to increase awareness of Mucopolysaccharide and related diseases amongst health, social care and education professionals
- to extend this to the community at large to secure improved local services and inclusion for affected children and adults and their families
- to raise funds for research into Mucopolysaccharide and related diseases that may lead to improved clinical care, quality or life and new therapies.
In order to carry out these objectives:
- we research the needs of children and adults affected by MPS and related diseases
- we fund cutting-edge, peer-reviewed research that may lead to therapeutic options for those affected
- we campaign for change in government policy and practice
- we deliver services to those affected by MPS and related diseases
- we operate in the four countries of the United Kingdom and collaborate with MPS Societies throughout Europe and the rest of the world, raise money and seek ways to grow income.
To achieve these objects, we rely on:
- funding from voluntary donations, corporate donors, charitable trusts and statutory bodies
- support from the public who fundraise and take part in events organised by the MPS Society
