Rare Connections

Rare Connections is a short-form documentary film series that elevates the diverse voices and lived experiences of people navigating life with debilitating rare diseases. Through intimate, patient‑led storytelling, the series creates space for honest reflection, shared connection and authentic community dialogue, capturing the powerful moments that occur when individuals feel truly seen, heard and understood.
Across the series’ two films, Rare Connections in NMOSD and Rare Connections in gMG, Alexion worked closely with patients, caregivers and advocacy groups to ensure each story was shaped with integrity and guided by the perspectives of those affected. The result is a deeply human exploration of both the daily realities and the emotional complexities of living with rare autoimmune disorders: neuromyelitis optica spectrum disorder (NMOSD) and generalized myasthenia gravis (gMG).
In Rare Connections in NMOSD, three individuals, Craig, Alex and Marie, exchange personal letters that reveal the profound physical, emotional and social burdens of NMOSD. Their candid reflections, offered through the lens of their own experiences, shed light on common challenges within the rare disease community, including misdiagnosis, isolation and limited access to care. As their stories unfold, viewers witness their vulnerability as well as their resilience and the emergence of connection that comes with shared experience.
Rare Connections in gMG follows Marta, Nick and Deanna, who invite viewers into their lives through personal journal entries written to loved ones. Their stories highlight the unpredictable, often invisible nature of gMG and the strength required to navigate a condition that is frequently misunderstood. By conveying the impact of fluctuating symptoms on their physical, emotional and social well‑being, they offer a window into the determination and quiet courage of living with a chronic rare disease.
Together, the films aim to foster deeper conversation within and beyond each rare disease community. By elevating patient voices, the series highlights the importance of early diagnosis and symptom management and the critical role of empowered storytelling in increasing awareness, empathy and support.