Creative Partners in Health (CPiH) collaborated with a global biopharmaceutical leader to address significant unmet needs in the management and advocacy landscape for rare developmental and epileptic encephalopathies (DEE). Leveraging a comprehensive blend of insights from internal stakeholders, external patient advocacy groups, and real-world evidence, we identified three priority areas for external engagement: awareness and policy prioritization, organization of care and patient pathways, and enhanced data generation for market access.

The project spotlighted the stark challenges faced by patients and caregivers due to fragmented care pathways and minimal awareness among policymakers. Through targeted stakeholder interviews and secondary research, CPiH designed an activation plan to elevate DEE to a priority policy level. Our recommendations included forming a multi-stakeholder roundtable to drive consensus, publishing a position paper to influence regulatory bodies, and launching initiatives to standardize care guidelines. These efforts aim to close the care gaps, particularly in transitioning patients from pediatric to adult care, where significant drop-offs occur.

This initiative exemplifies CPiH’s commitment to creating impactful, patient-centered healthcare strategies. By aligning clinical insights with policy-driven advocacy, we empower organizations to champion neglected diseases, ensuring a meaningful shift in care standards and societal recognition for underserved communities.