In our latest 81qd Tools of Engagement: The Science and Strategy of Stakeholder Engagement podcast episode, host Susan Abedi, sits down with Michelle Werner, CEO-Partner and Chief Executive Officer of Alltrna, to delve into effective stakeholder engagement strategies in the rare disease space. Michelle shares her journey from a long career in large biopharma to leading Alltrna, a biotech company with the potential to transform rare disease therapies.
The discussion emphasizes the urgency of rare disease research, the power of patient advocacy, and effective stakeholder engagement strategies—including patients, caregivers, clinicians, advocacy groups, regulators, and market access experts—to drive meaningful innovation and collaboration in biopharma.
Key Takeaways:
- Engage early, engage often: Proactively building relationships with rare disease space stakeholders ensures better research outcomes and more effective treatment development.
- Stakeholder alignment: While there are thousands of distinct conditions—each often with its own advocacy group—the number of thought leaders within a space may be limited, resulting in more consistent input and closer collaboration between patient communities and researchers.
- Patients, their families, and caregivers have powerful knowledge: Their insights and lived experiences should be deeply integrated into drug development and company strategy to bring the best medicines forward, faster.
- Multidisciplinary collaboration is essential: KOLs are only the start – Engagement approach needs to capture thought leaders, clinicians across the care team, regulators, and patient groups, to create impactful, patient-centered solutions.eutic strategy.
Watch the Full Episode
Purpose-Built Data Analytics Tools
Orion
Undiagnosed Patient and Rare Disease Analytics
Orion uses machine learning to identify HCPs providing care to both diagnosed and yet-to-be-diagnosed patients in rare and hard-to-diagnose diseases, streamlining disease diagnosis processes.
Plexus
HCP Targeting and Clinical Network Analysis
Plexus delivers precise HCP targeting and clinical network mapping, leveraging big data and AI for in-depth analyses and strategic decision-making in diverse therapeutic areas and rare diseases.
Deepen Your Insights
Explore our resources to learn how AI, real-world data, and HCP network mapping can accelerate diagnosis, optimize market access, and enhance patient advocacy partnerships.
- Leverage AI for Precision in Rare Disease Diagnosis
- Rare Disease Patient Identification Project Case Study
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To discover how 81qd’s expertise can support your initiatives in the rare disease space, request a demo or reach out to our team.