Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, we believe that no one should face their rare journey alone.Living with a rare disease can be an extremely isolating experience; both for patients and their families. Rare patients often fall victim to misdiagnosis, delayed treatment, poor care coordination and a lack of support. It is all too common for those diagnosed with a rare condition to be given a printout from Google, and be told to go home and deal with it.Rare disease support groups are key to breaking this isolation. These advocacy groups help patients and families live with and manage their rare condition. Patient groups not only support the mental and physical health of their community, but also act as the community’s voice. A rare journey may be long, hard and complex, but know that Beacon will help guide you through every turn along the way.