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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 support, reliable information, and a strong, compassionate 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 support each other, while also accessing our team in a relaxed setting.

Online, our Virtual Support Hub provides a range of wellbeing resources, peer support 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 support families with personalised advice and emotional support 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.

When your child is diagnosed with an MPS or related condition, everything changes. As a dad, I can only imagine how overwhelming that must feel – the fear, the questions, the sense of facing the unknown. These rare, progressive diseases bring challenges most families have never prepared for. 

The MPS Society is a lifeline. As the only UK charity dedicated to these conditions, they offer expert advice, emotional support and a community that truly understands what families are going through. 

From the moment families reach out, they feel less alone. Through family events, online support groups, counselling and practical help, the MPS Society is there – on the hardest days and the hopeful ones. 

They connect people, create understanding, and make sure no one has to face this journey in isolation. Most of all, they’re a constant presence – supporting families at every stage, helping them find strength, connection and hope.

Tillie’s early childhood appeared typical, though she was often clumsy and frequently ill. Her parents, Michala and her husband, initially thought her symptoms – ‘gunky’ eyes, runny nose, and hyperactivity - were part of growing up. However, after several visits to the doctor, they received the devastating news that Tillie had MPS (Sanfilippo Syndrome). 

Now 17, Tillie faces the challenges of losing her speech and mobility, yet she continues to enjoy life. She’s sociable, loves watching people, and is a big fan of Disney. Her special needs school provides a supportive environment, allowing her to live a fulfilling life. Tillie lives with mum and dad and has a sister at university.

The MPS Society, particularly Support Worker Steve, has been invaluable in providing practical support. Despite the difficulties of Sanfilippo Syndrome, Tillie’s family, with the ongoing support of the MPS Society, is committed to giving her the best life possible.

Leah was diagnosed with MPS Type MPS VI, Maroteaux-Lamy Syndrome, at the age of 3. Now 16, she uses a wheelchair for long distances, is partially sighted and is regularly exhausted but fiercely independent and now manages the therapy at home with her parents' assistance. As a young adult she connects with the MPS Society in many ways – through conferences, days out bowling - but more regularly online and with their Facebook and Instagram groups. She's now connected with loads of young people through the charity which she says just wouldn't have happened otherwise as the disease is so rare and people are spread far and wide. Leah’s Support Worker, Sally, from the MPS Society, also provides vital support, connecting with Leah online after her numerous difficult hospital visits. Sally understands the challenges all those with MPS have to deal with daily, and helps Leah feel less alone.  

On June 17th, 2024, Henry’s family received life-changing news when tests revealed that their son had MPS II, a rare and severe X-linked metabolic disorder. Henry has the most severe form. The effects of Henry’s condition include joint stiffness, breathing difficulties, an enlarged liver and spleen, hearing loss, cardiovascular issues, and cognitive delays. Despite these challenges, Henry continues to attend nursery and maintain a sense of normalcy in his life. Henry is an only child and lives with his mum and dad. 

The MPS Society has been an essential source of support, offering guidance on healthcare plans, assisting with Disability Living Allowance forms, and providing educational resources. They’ve also helped connect the family with others in similar situations.

Henry recently attended one of the charity’s family events. His parents were able to meet and talk to other parents about his condition giving them a sense of community and support.