Our support team
As the only charity supporting individuals and families affected by MPS, Fabry or a related disease 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.
We enhance our services with personal experiences, access to a community of peer support and collaboration with healthcare professionals. Every year we reach 1,500 families and recently experienced a 12.6% increase in demand for our services. Our Support and Advocacy Teamwork across the UK, averaging 2,655 miles per month visiting our members and provide them with vital support and advocacy.
From a single advocacy officer, back in 1986 funded by BBC Children in Need, covering the whole of the UK, the Society’s highly skilled advocacy team and supports over 1,500 families and individuals in all aspects of social care as well as access to special educational needs and clinical management.