Rare Connections in NMOSD

Rare Connections in NMOSD captures the magic that happens when people living with a rare disease are empowered to share their experiences without expectations. With invaluable input from patients, caregivers, and advocacy groups, Alexion has recognized that fostering community begins with asking the right questions and creating safe spaces for open dialogue. Authentic connections, as the film beautifully demonstrates, cannot be manufactured.

The film brings together three patients – Craig, Alex and Marie – to share their stories and uncover the connections between them through the exchange of personal letters. Their raw, honest letters underscore the debilitating impact of NMOSD and reflect the challenges that many people with rare diseases face: misdiagnosis, feeling dismissed and isolated and lack of access to care. However, the true power of the film lies in witnessing these individuals discover that they are united not only by their diagnosis but also by their resilience, determination and an inherent need for community.

Rare Connections in NMOSD was first debuted in March 2024 to the NMOSD patient and caregiver community, and then premiered for a broader audience in April 2024 at the American Academy of Neurology Annual Meeting. The film is currently available to stream on the Alexion global YouTube channel and there is an accessible version available to ensure those who are visually impaired can experience the film in a meaningful way.