• 1: Home
• 2: MPS Diseases
• 3: Fabry Disease
• 4: Advocacy Support
  • 4.1: Aims
  • 4.2: Principles
  • 4.3: Areas of Support
  • 4.4: MPS clinics
  • 4.5: Support after diagnosis
  • 4.6: Clinical management
  • 4.7: Bereavement
  • 4.8: Case Studies
• 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

Support after diagnosis of an MPS or related disease

The Society provides support to individuals and families where a diagnosis of MPS has been made. Contact can be made by telephone, letter or registering details on the Society’s website. On receipt of a new diagnosis, the Society will make contact by providing a membership pack which includes information about the Society and the support it provides, details on how to become a member, copies of the relevant disease booklet/fact sheet and copies of the MPS magazine. Each new member is offered a home visit and will be given information about the centres specialising in MPS and, specifically, the support the Society can provide.

Key aims of support

Principles underpinning the advocacy support service

Areas of support provided by the advocacy team

MPS regional clinic programme

Clinical management

Palliative care, pre/post bereavement support