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Newly diagnosed

We are here for you. If you or a family member have recently received a new diagnosis, we understand the information you have been provided with may be new and confusing and it may be difficult to know where to go for further advice and information. From point of contact, we provide emotional support, practical advice, resources, guidance and signposting where needed. Our specialist knowledge of MPS, Fabry and related diseases and our social work experience means we can help in any stage of your journey.

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Facebook Support Hub

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If you are a Facebook user, you are warmly invited to join our Support Hub.
It’s a private Facebook group, monitored by our Support & Advocacy Team but first and foremost, it is a safe space for you – a little online haven where you can come to be heard and understood by people who have been there. We’d love for you to join us, simply complete a few entry questions, and be part of a community that understands.

About us

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Founded in 1982, we are the only registered charity in the UK which focusses on MPS (Mucopolysaccharide), Fabry and related disorders. These disorders cause a range of progressive disabilities. 

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