Early-stage rare disease biotech leadership teams convince themselves that positioning and narrative are commercial-stage problems. The data isn’t in yet. There’s no commercial team to brief. So the brand work waits.
That waiting is the mistake.
Even before you have a defined indication, an approved label, or a launch year on the calendar, you are making impressions. Every investigator meeting, every patient advocacy call, every congress panel is shaping what stakeholders think your company is and what it stands for. The question is whether you are shaping that perception with intent, or letting it form by accident.
Your earliest stakeholders are your most important ones
The investigator who joins your steering committee in Phase 1 is the same investigator who speaks about your asset at a congress in Phase 3. The advocacy leader who agrees to an exploratory call early shapes regulatory perception years later. These contacts are the foundation of how your company will be read by the rare disease ecosystem for the next decade.
If the first time they encounter a structured narrative is when commercial planning kicks in, you have lost ground. Worse: you may have introduced inconsistency that is harder to unwind than a clean start would have been.
Without a frame, every leader fills the gap differently
The scientific founder leans into the mechanism. The CEO leans into the milestone story. The CMO leans into the clinical strategy. All of those framings might be true on their own. But stakeholders pattern-match across encounters. Inconsistency reads as disorganization. Disorganization reads as risk. In rare disease, where stakeholder trust is currency, that cost is high.
You can correct course later. Correcting later is far harder than getting it right the first time.
What early narrative work actually requires
Early discipline is far more focused than a polished brand campaign.
A clear point of view on what makes the company distinctive, even in absence of complete data. A handful of messages every senior leader can deliver consistently in their own words. An understanding of how each stakeholder type sees the disease, and what your company needs to acknowledge before it can advance its own view.
That is what makes a small early-stage company show up the way an established one would, without spending what an established one would.
The cost of waiting
The cost of starting early is small: a focused engagement, senior leaders aligned, a few messages tested with the right stakeholders.
The cost of waiting is harder to see until it shows up. Inconsistent positioning. Advocacy partners forming opinions before you give them a frame. Investigators picking up signals from your competitors faster than from you. Your eventual commercial team inheriting impressions they have to correct.
First impressions get made years before launch. By the time the launch comes, they are already in place. The question is whether you put them there with intent, or whether someone else did.
Kristin Marvin Keller is the Principal of Compleo Advisors, a rare disease strategy and creative firm.