Neuromyelitis optica spectrum disorder (NMOSD) is a rare and debilitating neurological disease that affects the central nervous system, including the spine and optic nerves. Most people living with NMOSD experience unpredictable relapses, also known as attacks, which tend to be severe and recurrent. Just one relapse can result in long-term disability, such as vision loss or paralysis. The journey to diagnosis can be long, with NMOSD often misdiagnosed or confused for other conditions – and many patients with NMOSD have never met another person living with the disease.
Rare Connections in NMOSD is a groundbreaking short film from Alexion, AstraZeneca Rare Disease, designed to raise awareness of NMOSD, drive connection within the global NMOSD community and spark dialogue about health equity in rare disease. The film elevates patient voices to drive education, furthering efforts to reduce time to diagnosis and improve patient outcomes. Alexion has a longstanding commitment to the communities they serve, which goes beyond developing therapeutics to help close gaps in treatment, care and access.
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 input from patients, caregivers and advocacy groups, Alexion recognized that one of the most valuable ways to fuel community building is to ask questions and create safe spaces for people to share. Authentic connections 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. But the power of the film is in watching each of them as they learn that they are not only bound together by diagnosis, they are also connected by their resilience, determination and a 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 Alexion’s 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.
Since its premiere, the film has reached thousands – including patients, caregivers, healthcare providers and the general public:
- 35,500+ views on Alexion’s YouTube page
- 100+ attendees at the NYC community premiere
- Screenings at leading neurology medical congresses, including the American Academy of Neurology and the European Academy of Neurology
The film has garnered momentum with positive coverage from pharma, marketing and rare disease trade media, including Endpoints and Fierce Pharma. Interviews with Alexion’s leadership team offered perspective on the NMOSD patient journey and the goals for the film. Fierce Pharma noted Rare Connections in NMOSD “ties into Alexion’s many years’ worth of work to ‘deeply and meaningfully’ engage with patients to better understand their gaps in care and unmet needs.”
NYC-based micro-influencer Jonet Williamson attended the community premiere, providing makeup services for Alex and Marie and capturing content about the impact of NMOSD to extend awareness efforts. Her posts generated 5,000+ impressions and drove traffic to the film – several of her followers commented this is “amazing.”
Community feedback has been overwhelmingly powerful – healthcare providers shared they learned more about the NMOSD patient experience through this film than in medical school; a patient advocacy group leader commented, “the community is blessed to have such amazing people to further awareness and help them fight.”
In addition to amplifying new patient voices to educate on the impact of rare diseases like NMOSD, this film has provided an overwhelming sense of validation and hope for a community that may often feel overlooked.
