Since we formed in the 1980s, around the kitchen table of our founder, Christine Lavery, the MPS Society has focussed on making life better for people living with MPS.
The list of conditions we provide support for has grown over the years to include related lysosomal disorders like Fabry and Mucolipodosis, which would have otherwise had no patient support. The charity has evolved over these past 40 years but our focus on living the best life possible remains, and at the core of what we do now are three main objectives, to ensure our community have access to exceptional support and advice, world-class clinical care and effective treatments.
This year we expanded our support service to offer more online options. A growing population of our community joined our Support Hub Facebook Group, WhatsApp groups and weekly Teams calls to interact with their peers and provide support across the country to each other.
We work closely with clinical teams and partnerships to improve all aspects of clinical care, including working on the MPS airway project and holding the first meeting to discuss the development of an emergency airway management plan for patients.
The exciting and very successful Fabry Matters Conference 2024 was a major highlight of our year, collecting data and informing the patient community in a single productive weekend.
To oversee our activities we are lucky to have a group of trustees from different backgrounds, it includes those living with the conditions, family members of those with the conditions as well as scientists, clinicians and professionals.
