The 20th Annual NPUK Golf Day, July 2026 Our 20th Annual Niemann-Pick UK Golf Day at Ramside Hall Golf Club was a powerful reminder of what community, compassion and shared purpose can achieve. The venue itself felt renewed – fresher, brighter and more welcoming than in previous years, adding an extra layer of joy to […]
19th – 21st June 2026 Wearside Golf Club hosted its annual Captain’s Weekend in June 2026, delivering three days of golf, laughter, friendly competition and community spirit. The weekend featured three different competitions each day, with a wide range of fun prizes on offer. Members and guests enjoyed the course in good weather, shared plenty […]
Helping to improve understanding and earlier diagnosis through lived experience Families affected by Niemann-Pick often experience a long and complex journey before receiving a diagnosis. Understanding these rea-life experiences is key to improving awareness and supporting earlier diagnosis in the future. My Rare Journey is a platform created by OpalMedica to collect diagnostic stories from […]
We want to say a heartfelt thank you to Dave Smith for all of his support for Niemann-Pick UK, enjoy your well-deserved retirement. The entire Staff and Board of Niemann-Pick UK (NPUK) want to express our sincere gratitude to the wonderful Dave Smith, former Research Assistant at the Department of Pharmacology (University of Oxford), for […]
A Legacy of Love and Fundraising Every year, a group of golfers gather for a day filled with swings, smiles, and a shared purpose that goes beyond the fairways. The Annual Niemann-Pick UK (NPUK) Golf Day, organised by Craig Mathieson, is more than just a sporting event—it’s a heartfelt tribute to his niece, Lucy Mathieson, […]
Without Xenpozyme, Caitlin Monachan’s rare genetic disorder may kill her. But she must wait for the medication to be approved in the UK Early last year, 26-year-old Caitlin Monachan received a devastating diagnosis. She has Niemann-Pick disease, an ultra-rare genetic disorder caused by a missing enzyme, where toxic material builds up in the body, fatally damaging the lungs, liver […]
