The PM Society Charity
We are pleased to be working with Niemann-Pick UK (NPUK) and to be supporting their fundraising efforts.
Niemann-Pick UK (NPUK) is the leading charity in the UK dedicated solely to supporting individuals and families affected by Niemann-Pick diseases. Since our formation in 1991, we have worked tirelessly to offer practical support, emotional care, and to drive forward research in search of viable treatments. We are proud to work alongside dedicated families, clinicians, researchers, and partners across the rare disease landscape to support those affected by Niemann-Pick diseases (NPD)—a group of devastating, life-limiting neurodegenerative conditions for which there is currently no cure.
Globally, over 350 million people live with a rare disease, and more than 75% of these affect children. For many families, this means navigating an exhausting and uncertain journey marked by complex symptoms, a lack of clear treatment options, and the emotional toll of watching a loved one’s condition worsen over time. This is the harsh reality for those impacted by Niemann-Pick diseases and other conditions like them. NPD can lead to severe physical and neurological symptoms, including progressive loss of motor and cognitive function, organ enlargement, and feeding and mobility challenges. It can affect infants, children, and adults, and each subtype brings its own challenges.
For many patients, treatment options remain limited or unavailable, with families often receiving a diagnosis alongside the devastating news that little can be done medically: a moment which brings profound grief, fear, and unanswered questions. This is why we collaborate closely with healthcare professionals, research institutions, and international partners to ensure the voices of our community are heard and that their needs are at the forefront of medical and scientific progress, and believe that timely diagnosis is the first step towards much-needed clarity and care. Every step we take is guided by the experiences of those living with these conditions.
To learn more about our work, and how you may support it, please visit our website at: www.npuk.org or check us out on social media @NiemannPickUK