Niemann-Pick UK

Niemann-Pick UK (NPUK) is a UK-based patient advocacy group dedicated to supporting individuals and families affected by Niemann-Pick diseases. The organization provides practical and emotional support, information, and strives to raise awareness to facilitate research and potential therapies. Core activities include a comprehensive care and support program for patients and families, publication of patient and professional resources, campaigns to raise awareness (e.g., Life Is Rare), and opportunities for involvement through volunteering and fundraising. NPUK partners with international and UK organizations to advance research, collaborate on registries and clinical guidelines, and connect patients with specialist centers. The Publications hub serves as a resource repository offering guides for parents, carers, and healthcare professionals, symptom cards, patient stories, and professional guidelines developed in collaboration with INPDR. NPUK encourages involvement from the community through fundraising, volunteering, and governance roles.