MPS and related diseases are a group of 25 rare and incurable genetic conditions which cause progressive physical disability. The MPS Society is the only charity that supports affected individuals and families through its team of dedicated Support Officers, providing a lifeline for affected families
It ran from 12:00 PM, 3 December 2019 to 12:00 PM, 10 December 2019
Registered Charity in England and Wales (1143472)
We’ve only been dealing with MPS for a short while, but it has changed our lives. The MPS Society has been very helpful in sending us supportive information and offering to put us in touch with other families who are affected by MPS.
The symptoms of MPS and related diseases present unique and complex issues. For example, children whose disease causes learning disabilities may have challenging behaviours, with many needing 24 hour supervision putting significant strain on their families. In 2018, we reached 1,500 families with our vital support and advice and experienced a 12.6% increase in demand for our services. Our support and advocacy team work across the UK and we need vital funds in order to carry out this service.
As the only charity supporting individuals and families affected by MPS and related diseases in the UK, we offer the specialist support, information and advocacy that our community needs to make informed decisions, whether about treatment, education or benefits. Over the next 3 years we want to expand our patient services and advocacy team to meet the increasing demand of our 1,500 members
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