Dear friends and supporters,

By now, you will likely have heard about the serious fire in September which destroyed a substantial area of the building where the NPUK Central Office is based.

We have since been given access to fully assess the damage, and it is as we feared - very little remains and it will undoubtedly be a huge effort to try to recover and recoup the resources, publications, equipment and other materials.

This disaster comes at a time when we are already struggling to keep afloat as a small charity. NPUK is the UK’s leading - and only - charity solely dedicated to Niemann-Pick diseases. We provide vital support, information, advocacy, and a sense of community to those affected by these devastating rare conditions. Losing our office, our base for so many years, and countless resources is a huge blow, but we are determined to carry on for the families who rely on us.

While we will be working with insurers, seeking legal advice, and creating a continuity plan, the immediate costs of disruption and recovery are far beyond what we can manage alone.

That’s why we are asking for your support. Every donation, big or small, will help us rebuild, recover vital equipment, and ensure we can continue supporting families affected by Niemann-Pick diseases.

Thank you so much,

John Lee Taggart

NPUK Head of Communications