• 1: Home
• 2: MPS Diseases
• 3: Fabry Disease
• 4: Advocacy Support
• 6: Fundraising
• 7: How Your Money Helps
• 8: Research
• 9: Information Resource
• 10: Kids Section
• 11: Events
• 12: Childhood Wood
• 13: Latest News
• 14: Downloads
• 15: Contact Us
• 16: Register a Sufferer
• 17: Become a Friend of MPS
• 18: LSD Collaborative
• 19: International Contacts
• 22: MPS House
• 27: CRB Checks
• 28: Links
• 29: Site Map
• 30: Terms and Conditions

The money you raise helps us provide vital support to children, adults and families affected by MPS and related diseases throughout the UK.

Support and Information

The MPS Society provides help to our members through an individual advocacy support service. The rarity of MPS and related diseases, including Fabry Disease, means affected individuals and their families may experience difficulties accessing adequate needs-led support and services within their local area. The MPS Society's advocacy team provides a support network promoting awareness and understanding of the diseases and works in partnership with members, their families, as well as developing professional relationships with local social care and health professionals.

• £60 would enable one family to attend a regional family event, such as a trip to Cadbury World, to have fun with other MPS families;
• £100 is the average cost for a newly diagnosed family to receive an MPS information pack and a new family home visit from a member of the Advocacy Team;
• £200 would enable a child who lives with a brother or sister with MPS to attend an MPS Sibling Weekend to relax and enjoy new experiences with other siblings, supported by trained volunteers;
• £550 would enable a young adult with an MPS or a related disease to spend two nights away on a Young Adult Weekend, with volunteer care. This is often the first opportunity these young adults have had to go on a short holiday independently of their families;
• £1000 would fund the Childhood Wood Remembrance Day and planting. This is a special time for families to remember their loved ones whom they have lost to an MPS or Related Disease;
  £2000 would fund 12 specialist MPS clinics in a year;
• £3500 would enable the Society to provide one quarterly issue of the MPS Magazine to 1200 member families, professionals and Friends of MPS

Events

Many individuals and families suffer isolation when a rare condition like one of the MPS or related diseases is diagnosed. They can feel shut off and very much alone. The MPS Society's events bring families and individuals affected by MPS or a Related Disease together to share support, and to enjoy each others company. The idea was first conceived in 1986 and by 1987 it became a reality and every year since then the Society has had the privilege to offer families and individuals the opportunity to support each other in this way. Read more...

Research

New therapies require years of pre-clinical work followed by clinical trial before they can be licensed. It can seem to take forever when you are the patient or the carer of a child or an adult with an incurable or life limiting disease. 

The Society's research objective is to ‘Promote and Support Research into MPS and Related Disorders.' Its purpose is to play a leading role with clinicians, scientists and academics in initiating and funding innovative research projects which may have a therapeutic benefit to those affected by MPS and Related Disorders.

Between 1985 and 2010 the Society has funded and participated in innovative projects that have advanced the knowledge of MPS and related diseases.

Annual Review and Accounts 2009