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About us

The MPS Society’s support and advocacy team is at the core of everything the charity delivers. It provides a unique, flexible and wide-ranging support service to its members from the point of diagnosis.

The rarity of MPS, Fabry and related diseases means affected individuals and their families often experience difficulties accessing support services in their local areas.

Our experienced and skilled team works closely with individuals and their families as well as with health, social care and educational professionals to make sure the needs of our members always come first.

All our support officers are trained in MPS, Fabry and related diseases and are DBS checked.

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How we can support you

From point of contact, we provide emotional support, practical advice, information and guidance as well as signposting where needed. Our specialist knowledge of the MPS, Fabry and related diseases and our social work experience means we can help in any stage of your journey.

Information relevant to you

Newly diagnosed support

We are here for you. The MPS Society supports individuals affected by 27 rare lysosomal storage diseases. Become a free members, find useful resources, including guides to understanding MPS and related diseases, information on available treatments, research and clinical trials as well as support and advocacy. 

Useful resources

Contact the support and advocacy team

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

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