Parent support

We are here to support you, from diagnosis, through treatment and beyond 

​When you or your child has been diagnosed with MPS, Fabry or a related disease it can be a very worrying and isolating time. The MPS Society provides a range of support to parents, professionals and the whole family from diagnosis through treatment and beyond. 


The MPS Society is the only UK charity that supports people affected by one of 25 rare diseases. These diseases are cruel, genetic and life-limiting. Our support and advocacy team offers a needs-led service which is tailored to each individual or family. They bring support to families during times of crisis and are there for as long as they need.


How we can help

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Members receive up to date information, help and support.

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Befriending is a support service that we offer to affected members.

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Challenging behaviour is how we talk about a range of behaviours which some people with disabilities may display.

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Throughout the year we hold a number of events for our families to get together to 

have fun as a family.

Contact the support and advocacy team

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