Building a rare disease KOL network from the ground upwards

Challenge

A client entering a new rare disease space faced a common but critical issue: identifying the experts and finding a way to work with them. The landscape was variable by market, with little alignment on diagnosis or disease management.

The company needed to identify the right Key Opinion Leaders (KOLs) across multiple global markets, understand their perspectives on the disease and its management, and start to build long-term relationships to support education, research, and future clinical trials. Importantly, this wasn’t about short-term engagement — it required a structured five-year plan.

Approach

We combined quantitative data analysis with qualitative insight to build a robust picture of the global expert landscape.

On the quantitative side, we used tools to analyse publications, citation impact, clinical trial involvement, congress activity, and guideline participation to identify potential scientific leaders.

We then validated and enriched these data through peer nominations and in-depth interviews to understand attitudes, influence networks, and openness to collaboration — ensuring we identified not just established names, but emerging and regional experts too.

Execution

We mapped and segmented KOLs across priority markets, creating a dynamic, tiered database to guide engagement.

Through qualitative interviews, we explored perceptions of unmet need, diagnostic and treatment challenges, research barriers, and interest in collaboration. These insights shaped both global medical strategy and market-specific engagement plans.

A phased five-year roadmap was developed that included early scientific exchange and advisory engagement as well as longer-term collaboration on education and publications.

Impact

The project provided:

• A clear, data-driven global KOL map

• Early identification of high-potential advocates

• A framework to ensure long-term continuity and credibility

By blending analytics with meaningful dialogue, we helped the client move from market newcomer to trusted scientific partner in a complex rare disease environment.