For many families in the rare disease community, social media has become a powerful advocacy tool. It helps raise awareness, connect with other families, influence research, and push for change. For years, parents and caregivers have been the voices telling these stories — often long before their children were able to understand them. But what happens when your affected child grows up and starts using social media themselves? This moment can bring pride, uncertainty, and some

When you hear the words “Niemann-Pick disease” , you might think first of the medical facts – a rare genetic condition, no cure, limited treatments. But behind every diagnosis is a family living, loving, and creating moments that matter. For Renee, mum to three children diagnosed with Niemann-Pick type C (NPC) – Hudson (10), Holly (9), and Austin (7) – life is not defined by the disease, but by the joy, resilience, and hope that her family carries forward each day. In her own