Advocacy support

Providing specialist support and advice

The MPS Society is the only UK charity supporting individuals and families affected by MPS and related diseases. We offer an individual advocacy support service with skilled and experienced staff who can offer you a wide range of support depending on you or your family’s needs.

The rarity of these conditions means affected individuals and their families often experience difficulties accessing adequate needs-led support and services in their local area. We provide a support network promoting awareness and understanding of the diseases and we work in partnership with you and your family as well as developing professional relationships with local health professionals.

Thank you to Summerfield Charitable Trust for their recent donation to the advocacy and support service. We rely solely on support from public donations, companies and trusts and foundations to offer this service and to be able to support families and individuals. Find out more about how we can help or view our leaflet for more information which is also available to download as a PDF.


How we can help

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Signposting to support

Our team can look for details of help and support in your area.

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Travelling abroad

From finding the right travel insurance to travelling with disability, we have advice.


Advice, information and support for transition from child to adult services.

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Housing and equipment

Help with appropriate housing and home adaptations to meet your needs.


We can help you get the most appropriate education for your child.

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Register your condition

Become a member of the Society for free to receive information, help and support.

Contact the support and advocacy team

Our helpline is open 9-5pm Monday-Friday: 0345 389 9901 or you can email:
Out of hours support line: open 5pm-10pm Monday-Friday and weekends: 07712 653 258 


We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

Images and stories may not be reproduced without express written permission.

© 2020 Society for Mucopolysaccharide Diseases