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The MPS Society provides support to families affected by one of 25 rare, life limiting genetic conditions. We want all affected children and adults to know where to turn for specialist knowledge, support and advice.

About us

The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS, Fabry and related diseases. These diseases are rare or ultra-rare and are both progressive and life limiting. Through our highly dedicated team we offer support throughout the UK that both informs and empowers the community we serve and that raises awareness of this disease group to a wider audience both nationally and internationally.


We offer flexibility in working hours, free on-site parking, 25 days (pro-rata) paid holiday per year and life insurance cover (subject to the conditions of the scheme)

Current vacancies


Support and Advocacy Officer

We are looking for someone with ability and enthusiasm who will enjoy working as part of a small dedicated team of Support and Advocacy Officers providing a UK-wide service that offers information, advice, support and advocacy in areas including clinical management, social care, housing, education, transition, independent living, palliative care and bereavement.


You will need to have excellent written and oral communication skills, upholding best practice, challenging poor policy and inappropriate decisions, and ensuring the individual or family remain the centre of support are key elements of the post. 


In-depth support and training will be provided, along with regular supervision and a supportive work culture to help you expand your knowledge and become an expert in the work you are undertaking. This post is office based in Amersham but requires UK wide travel and includes unsociable hours, evening and weekend work.

Applications are now open

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

0345 389 9901

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

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© 2021 Society for Mucopolysaccharide Diseases