Around 2000 people in the UK have an MPS or related condition. They are rare, progressive conditions where the body can’t get rid of the waste in cells, disrupting cell function and affecting the body in different ways. They’re so rare your doctor will probably not have heard of it, leaving those who have been diagnosed feeling lonely, isolated and unsure where to turn.
Symptoms vary, but many people experience physical, emotional, and social difficulties. As the only UK charity dedicated to these diseases, the MPS Society is here to help. We offer expert , reliable information, and a strong, comionate community for everyone affected.
We bring families together through inclusive events—hosting around eight each year for over 700 people. These are safe, welcoming spaces where families can connect, have fun, and each other, while also accessing our team in a relaxed setting.
Online, our Virtual Hub provides a range of wellbeing resources, peer groups, and one-to-one counselling. Our moderated Facebook community offers a safe space to share experiences, ask questions, and feel understood.
Throughout the year, we families with personalised advice and emotional on complex issues such as disease progression, education, palliative care, and planning for the future.
We also fund research and work with clinical professionals to improve care and provide treatments.
Whether newly diagnosed or navigating life with a rare condition, no one should have to face it alone. We’re here every step of the way.
