Changes to our service as a result of COVID-19

    Due to the changing situation with the COVID-19 outbreak the MPS Society (including RDRP) has taken the decision to close our offices and ask our staff to work remotely as of end of the day Tuesday 17 March.

    We are still here to support you and have taken steps to make sure the services we offer continue to run as they normally would, as far as possible. We will be using video teleconference facilities instead of face to face visits or attending clinics, our staff have secure access to information from their homes and our telephones are being redirected.

    You can contact your Support Worker via the main switchboard or by calling their work mobile numbers (listed below), you can also email them directly or at Our out of hours number is 07712 653258 and is available Monday to Friday 7am-9am and 5pm-10pm and weekends 7am-10pm.

    Support workers:

    Sophie – 07920 234802

    Steve – 07341 564185

    Rebecca – 07881 292056

    Louise – 07920 23480

    Sally – 07920 234800

    For other departments please call our main number as normal which will be diverted to a head of department: 0345 389 9901. We will be periodically checking the post but where possible please email instead:

    We have postponed two events in June, the rare of the rare expert meeting and the family trip to Alton Towers. We will update you as soon as we know about the new dates and on any other changes to our events calendar this year.

    If you have not already seen our advice on COVID-19 and living with an inherited metabolic condition you can download the resource here.

    Please get in touch if you have any concerns and thank you for your understanding this change in working arrangements.

    The MPS Society

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

    Images and stories may not be reproduced without express written permission. © 2019 Society for Mucopolysaccharide Diseases

    MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP

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    0345 389 9901