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Society for Mucopolysaccharide Diseases

Address: MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP
Tel: 0845 389 9901
Description:

Support group for children and individuals affected by MPS disease.

Mucopolysaccharide Diseases are a group of rare metabolic diseases referred to as MPS 1-V11 or more commonly by the name of the doctor who first described the condition: Hurler, Scheie, Hunter, Sanfilippo, Morquio, Maroteaux Lamy and Sly.

Aims:

  • To offer support and advice to affected individuals and their families, carers and professionals
  • To act as a support network for those affected by MPS and related diseases
  • To bring about more public awareness of MPS and related diseases
  • To promote and support research into MPS and related diseases
  • To find, by means of research, a cure for the disease

The Society works to meet its aims by providing the following services:

  • Telephone helpline
  • Network of befrienders
  • Advocacy support
  • National and international conferences
  • Bereavement support
  • Research and treatment
  • Sibling workshops
  • Regional clinics, information days and conferences
  • Support to young people and adults with MPS
  • Information sources

Membership: Free to affected individuals and their families. There is a small annual subscription fee for professionals and others who wish to receive the newsletter and other publications.

 

 

 

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Whilst all the information given in this document was correct at the time of going to press, DIAL Doncaster cannot be held responsible for any subsequent changes.

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