Society for Mucopolysaccharide Diseases

MPS House
Repton Place
White Lion Road
Amersham
Bucks
HP7 9LP

Tel (Office): 0845 389 9901
Fax: 0845 389 9902
Web: www.mpssociety.co.uk
Best time to telephone: Office: 9am - 5pm

Mucopolysaccharide (MPS) diseases and related diseases are a group of 23 rare metabolic diseases, referred to as MPS I-VII or more commonly by the name of the doctor who first described the condition: Hurler, Scheie, Hunter, Sanfilippo, Morquio, Maroteaux Lamy, and Sly.

Mucolipidoses and other storage diseases also covered by the Society are: ML I, ML II I cell disease, ML III pseudo Hurler dystrophy, ML IV, sialidosis, fucosidosis, mannosidosis, sialic acid storage disease, multiple sulphatase deficiency, aspartylglycosaminuria, Winchester and Fabry disease.

Children born with a mucopolysaccharide or a related disease are unable to produce enzymes essential for the continual process of breaking down and replacing used materials. Babies may show no sign of the disease, but as more and more cells become damaged by the storage of used material, symptoms begin to appear. Sadly these are progressive diseases which lead to an increase in problems as the years go by. Effects of the disease vary. Whilst at present there is no cure, Enzyme Replacement Therapy (ERT) is now licensed in Europe for Fabry Disease and in MPSI, Hurler Scheie and Scheie Disease.

The Society offers sufferers and their families the following services.

• Befrienders scheme.
• Annual weekend conference.
• Regional family get togethers.
• Information resource booklets on specific MPS and related diseases including Fabry disease and a quarterly magazine.
• Individual advocacy in areas of health, welfare benefits, education, adaptations and respite care.
• Telephone help line.
• Collaboration with the medical profession.
• Regional outreach clinics.
• Active involvement in supporting research.
• Current research news.
• Organising meetings with professionals from the UK and abroad.

The Society provides a range of booklets for a small cost. Please contact them direct for a copy of their publications list and up to date charges or see the download section of their website.