Advocacy Support

Society for Mucopolysaccharide Diseases
MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP, UK
Tel: 0845 389 9901 Fax: 0845 389 9902
National Registered Charity No. 287034

Advocacy Support

Introduction
The MPS Society provides help to its members through its much valued individual advocacy support service. The rarity of MPS and related diseases including Fabry Disease means individuals and families affected may experience difficulties accessing adequate needs-led support and services in their local area. To help 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.

Our aims and objectives are:

UK wide needs-led service to individuals and families
to provide information and advice on all aspects of living with an MPS or related disease or Fabry Disease
to ensure the assessment and provision of services by other support agencies are informed by a needs-led approach, based on an accurate understanding of needs of individuals diagnosed with an MPS or related disease or Fabry Disease, their families and carers
to uphold rights to needs-led support and services
to provide an active listening service to members including Out of Hours Helpline
to facilitate regional clinics as well as information days and conferences
to empower individuals and families to enable them to make informed choices

Principles
Integral to the support provided are the principles of:

tackling inequality and promoting equality
confidentiality
needs-led advocacy
promoting public and professional awareness of MPS and related diseases including Fabry Disease.
collaborative working with professionals and other organisations in the best interest of the individual family.

Support is carried out through telephone and written contact as well as the Advocacy Team attending meetings and making home visits UK-wide. Click here for more information about the areas covered by the Advocacy Support Team.