Rare purpose, real impact: an AI startup story

Estimated reading time: 4 minutes

“A serial entrepreneur and digital health innovator with over 20+ years in biotech and pharma, this founder launched an AI-focused venture to address gaps in healthcare. After her daughter was diagnosed with a rare genetic disorder, she shifted her career to amplify the voices of people living with rare and chronic conditions. Her mission-driven company uses technology, data and empathy to reimagine how disease is understood and how communities are empowered.”

What is front of mind in your business currently?

We’re laser-focused on scaling. We’ve built a strong foundation and a technology platform that works. We’ve found product-market fit and demonstrated real value.

What are the greatest challenges you face as a CEO, what are your pain points and barriers to overcome?

The challenge now is growing in an industry where the pace of progress is slow and unpredictable. For small, mission-driven companies like ours, the contracting and compliance process with large pharmaceutical partners can be painfully slow, resource-intensive, and complex.

We’re also operating in an environment full of uncertainty—pipeline shifts, failed assets, mergers and acquisitions, funding freezes, regulatory changes. All of these things can stall partnerships or derail momentum completely, even when the business case is strong. At the same time, we have to manage customer acquisition costs and runway carefully.

We’re confident in the impact our technology can have, and we’re committed to advancing it—but sustainably scaling requires navigating real systemic friction.

What are the greatest opportunities yet to be realised or on the horizon for your business?

Amid growing industry-wide efforts to streamline drug development and regulatory approvals, there’s a clear opportunity to rethink how insights are gathered and applied. Our technology has the potential to disrupt the traditional insights space—enabling companies to achieve the same or better outcomes at significantly lower cost. By breaking down internal silos and making insights accessible across business units, we help organisations avoid duplication, accelerate decision-making, and ensure that knowledge travels with the asset from research and development through commercialisation and launch. As pharmaceutical companies seek greater efficiency and integration, scalable, tech-enabled solutions like ours are increasingly aligned with their strategic goals.

If you could create overnight change, what would it be?

If I could create overnight change, I would encourage more precompetitive collaboration across the pharmaceutical and biotech industries. There’s tremendous opportunity for companies to work together—before the competitive stage—on foundational efforts like disease state awareness, defining meaningful endpoints, developing consistent outcome measures, and building real-world evidence frameworks. These shared efforts reduce duplicative work, lower costs, and accelerate the path to effective treatments and cures.

I’d also move away from the “pay to play” conference model that often excludes small and emerging companies from critical industry conversations. When access is tied to sponsorship dollars, we miss out on diverse perspectives and innovative thinking. Opening up these spaces would lead to richer dialogue, more inclusive progress, and ultimately better outcomes for patients.

What is the next ‘go-to’ event in your diary and why?

While the big conferences are great for networking—I’m attending fewer of them these days— I’m just not seeing the ROI that I once did. Instead, I’ve loaded up my calendar with smaller events, like community walks and patient conferences. These gatherings provide a more authentic space to connect with both community members and industry partners, fostering relationships that truly matter.

By directing my support to these initiatives, I feel I’m contributing to efforts that are driving progress for what our communities need most, all while still building meaningful connections with long-term impact.

incognito provides a candid look behind corporate closed doors in the RARE disease world.
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