Rare Insights: Beacon’s brand-new patient group study
Beacon for rare diseases, a Cambridge-based charity, has just launched Rare Insights – a ground-breaking study exploring the value and impact of rare disease patient groups, alongside the challenges they face.
Patient groups are often the first port-of-call for newly diagnosed patients with a rare disease. By providing much-needed support to individuals with rare diseases and their families, they become a lifeline, frequently advocating for research and helping to shape policies that put patients at their heart.