Our support officers
Meet the support team who enable us to support over 1500 families each year!
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.
"Knowing that what I do day in and day out is making a positive difference to the people we support is key for me. There is no better feeling than knowing the support I have provided has helped someone else. The majority of the individuals I support, have very short lives, and it is important that they are helped to make every day count".
"I am proud to head up the advocacy team, having worked as a support officer for many years I understand the determination and expertise required to support our families.
Supporting children, young people and adults affected by MPS, Fabry and related conditions and their families is at the heart of what we do, and so we strive to provide a responsive service that gives people the help they need when they need it.
We are often able to make a positive difference to the lives of our community and this gives a real sense of achievement."
"Knowing that we are living in times where getting even basic needs (and rights met) is so hard, I understand completely how it can get members and their families down. The continuous minefield of how to go about getting anything sorted is enough to make people give up.
Being part of a service that supports members and their families to achieve their needs and hopefully, take a share of the burden in doing so, is a great feeling.
When I get a call or email telling me their issue has moved forward as a result of our support, it makes me realise that even when it is hard and complicated, it ultimately is worth it and we move on to fight another day together!"
"Receiving a diagnosis of MPS, Fabry or a related disease can be devastating. It is a privilege to do what we can to help individuals and families deal with the reality of this and help in some small way to make that journey easier."
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 email us at: firstname.lastname@example.org