Lisa Shea Shares Key Takeaways from NORD Summit 2025
Lisa Shea, Director, Global Patient Advocacy and Engagement at Johnson & Johnson, shared on LinkedIn:
”In-person connections with advocacy leaders and partners bring stories to life, spark collaboration, and deepen our understanding of patient priorities—so our work reflects patient needs.
I just returned from this year’s NORD Summit, where the theme, “From Voices to Breakthroughs,” truly resonated with me—especially given my role in advocacy to elevate the patient voice and ensure it informs drug development and healthcare decisions.
Key Session Takeaways:
- Integrate Mental Health: Mental health is physical health; essential to outcomes and helps reduce isolation for patients and caregivers.
- Demonstrate Value for Access: Accelerated approvals need meaningful payer endpoints, proactive payer engagement, and robust patient support.
- Make Science Personal: Authentic storytelling and empathetic leadership foster trust and compassion. Embedding patient stories throughout product launch can make a lasting impact.
I was thrilled to present two abstracts that captured qualitative research on the lived experiences of HDFN and FNAIT pregnancies, highlighting fear, uncertainty and the burden of self-advocacy for individuals faced with alloimmune disease in pregnancy.
My colleague, Zia Choudhry, MD, PhD, MCS, MBA presented on patient-partnered research to shape educational resources in wAIHA.
We were joined by strong advocacy partners – Maternal Alloimmunization Foundation and wAIHA Warriors – grateful to these communities who continue to support and inspire others.”
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