Meet the CEO
Bob Stevens has been Group CEO of the MPS Society since 2017. He also holds various other roles, both in the UK and globally, representing the voice of our rare disease community.
Transforming lives through support, research and awareness
We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry and related lysosomal conditions in the UK.
Support
The MPS Society’s Support and Advocacy Team is at the core of everything the charity delivers.
Research
Through medical research and clinical trials we help find innovative ways to cope with living with the conditions.
Awareness
We invite you to celebrate our awareness events, share your stories and spread the word.
MPS Society events
Online
CSAC open day 2026
Join our CSAC Open Day, chaired by Dr Fiona Stewart. Hear how CSAC are funding key research projects with the aim of improving many lives with a lysosomal disease.
Find out more
London
London Landmarks Half Marathon
Do you want to join London's central half marathon through Westminster and the City?
Waiting list only
London
TCS London Marathon
Run the London Marathon for #TeamMPS. All runners receive a free fundraising pack and vest plus dedicated support every step of the way.
Waiting list only
Get support
When you or your child has been diagnosed with MPS, Fabry or a related lysosomal condition it can be a very worrying and isolating time.
Latest from MPS Society
News
Raising awareness for childhood dementia event
We need to act now. Read a summary of the key messages from the Childhood Dementia Scotland event in December 2025.
