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Just diagnosed


If you're a young person or a teenager with MPS or a related lysosomal diseases you probably have all sorts of questions.

What are MPS and related lysosomal diseases?

Sometimes mistakes in genes don’t make too much of a difference but sometimes a mistake can mean that a child is born with a genetic condition. It is very important to know if a child has a genetic condition because they might need special support to make sure they are healthy or may need some extra help.


MPSFabry and related diseases are genetic conditions and can affect different people in different ways. To find out more, read some of our family stories who have MPS, Fabry or a related disease.

However it feels for you, it’ll probably take some time for you to get your head round it. You’re likely to have lots of questions.


Having some facts to hand about MPS or a related disease will hopefully help you start coming to terms with your diagnosis. You may feel like you’re the only person in the world this is happening to but you are not alone and the MPS Society and community is here for you.

Useful links

For parents

For advocacy

For sibling support



Our helpline is open 9-5pm

Monday-Friday: 0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

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Contact us

Complete the form below to send a message to the advocacy team

Thank you for contacting us, a member of the team will be in touch shortly.

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