More Than You Can Imagine

There are more than 6,000 identified rare diseases. More than 300 million people worldwide are living with one. One in every ten Americans. And yet “rare” is often the word these patients hear first, from doctors who don’t recognize their symptoms, from insurers who won’t cover their treatment, from systems that were simply never built with them in mind. Rare, as in: we don’t have answers. Rare, as in: you’re largely on your own.

Rare Disease Day exists to say, loudly and without apology, no one should be on their own.

This year’s theme, “More Than You Can Imagine,” is exactly right. Because until you’ve actually spent time alongside this community, it is hard to fully grasp what they’re navigating. The patients who go years without a correct diagnosis, not because their disease isn’t real, but because too few people are trained to look for it. The caregivers who become pharmacologists, case managers, and patient advocates by necessity, not by choice. The researchers who dedicate careers to conditions affecting populations so small that the economics rarely make sense, and yet they do it anyway. The advocates who translate personal grief into political action, who travel to testify, who build the forums and communities that make sure the next family doesn’t have to start from zero.

At BNO, many of us have had the privilege of working alongside clients and partners in this space for many years. It tends to change how you think about marketing, and frankly, about a lot of things. When the audience for a campaign is only a few thousand patients worldwide, when a parent might see your ad and recognize for the first time that there’s a name for what their child has been struggling with, the work carries a weight that’s hard to overstate.

What we’ve learned from this community of amazing people isn’t a playbook. It’s a way of thinking, a posture. You learn to approach the work with humility, because the patients know more about their disease than most clinicians. You approach it with precision, because a message that misses the mark isn’t just ineffective, it can erode the trust these communities work incredibly hard to build. And you approach it with genuine care, because the people on the other side of every touchpoint are real, and they’ve already been through more than most of us will ever have to face.

To every patient, caregiver, advocate, researcher, and ally in the rare disease community, on this day and every day, thank you. The work you do, the ground you hold, the doors you open for the people who come after you are more than most people see—and more than enough reason to keep showing up.

Happy Rare Disease Day.