Embracing an opportunity for advocacy on Rare Disease Day

Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

When Alexion Pharmaceuticals first approached me about being featured for Rare Disease Day on Feb. 28, I initially declined the offer. Although I live with neuromyelitis optica spectrum disorder (NMOSD), I’ve always tried to keep my diagnosis at arm’s length. For me, NMOSD is something I manage — not something that defines who I am.

But advocacy matters. It’s how awareness grows, treatments advance, and people living with rare diseases feel seen. With that in mind, I eventually agreed to it on one condition: that my neurologist, Nasser AlOhaly, be featured alongside me.

I can say without hesitation that AlOhaly saved my life last year. During a period when I was experiencing attack after attack, he fought tirelessly to help me access my current treatment, Ultomiris (ravulizumab-cwvz). Since starting it, I haven’t had a single new attack. Having a neurologist who truly stood with me — who treated me as a partner, not just a case — felt like having a superpower against an incredibly challenging disorder.

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Amplifying patient voices

Alexion later shared that our story would be featured across all platforms associated with Patient Voice, a Canadian organization dedicated to elevating rare disease experiences through storytelling and advocacy. I’m grateful for the opportunity to contribute, not because I want attention, but because I believe honest stories can make a real difference.

It’s not uncommon for pharmaceutical companies to partner with advocacy organizations. These collaborations help amplify patient voices, support education, and ensure real experiences shape how rare diseases are understood. Advocacy groups bring authenticity and community insight, while pharmaceutical partners contribute resources, research, and a broader reach. When done thoughtfully, these partnerships can create a powerful platform for awareness, storytelling, and meaningful change for patients who are too often overlooked.

The Patient Voice team arranged a photo shoot for both AlOhaly and me individually, and by coincidence, it aligned perfectly with a scheduled check-up I had. That timing allowed them to capture a few natural, in-the-moment shots of us together during my appointment. I’ll admit, having a camera in the exam room felt strange at first, but the photographer quickly put me at ease. He treated me as a whole person, not just a patient, and showed a genuine curiosity to learn more about NMOSD. That sincerity made the experience feel meaningful rather than intrusive.

A few days after the photo shoot, I completed the interview for the article. The interviewer arrived with a structured list of questions, but our conversation quickly became more natural and human. We talked openly about the diagnostic process, the uncertainty surrounding each relapse, and the emotional weight of navigating life with NMOSD. It felt less like an interview and more like a genuine dialogue with someone who wanted to understand — not just the medical facts, but also the lived experiences behind them.

I haven’t seen the final article yet, but the working title was “Why Every NMOSD Relapse Matters.” That phrase alone captures so much of what we discussed. Every relapse is more than a medical event — it’s a moment that can alter mobility, independence, confidence, and the trajectory of someone’s life. Knowing this message will be shared publicly gives me hope that more people will understand the seriousness of NMOSD and the importance of timely treatment and advocacy.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.