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Opinion|Videos|February 25, 2025

Patient Voices: Shaping the Future of PNH Care

Author(s)David Dingli, MD, PhD, Brandi Lewis

Panelists discuss how their lived experiences and insights as patients should inform research priorities, treatment development, and care delivery improvements while sharing hopes for a future cure that would eliminate ongoing disease management needs and allow greater life flexibility.

Episodes in this series

EP. 1 Recognizing PNH and Initial Challenges

EP. 1 Recognizing PNH and Initial Challenges

EP. 2 Empowering Patients in Treatment Planning

EP. 2 Empowering Patients in Treatment Planning

EP. 3 Navigating Treatment Options: Understanding Risks and Benefits

EP. 3 Navigating Treatment Options: Understanding Risks and Benefits

EP. 4 Decoding Symptoms: When Fatigue Speaks Volumes

EP. 4 Decoding Symptoms: When Fatigue Speaks Volumes

EP. 5 Starting Treatment: Insights and Initial Experiences

EP. 5 Starting Treatment: Insights and Initial Experiences

EP. 6 Living With PNH: Long-Term Management and Caregiver Support

EP. 6 Living With PNH: Long-Term Management and Caregiver Support

EP. 7 Patient Voices: Shaping the Future of PNH Care

EP. 7 Patient Voices: Shaping the Future of PNH Care

EP. 8 Closing Reflection: A Journey of Understanding and Resilience

EP. 8 Closing Reflection: A Journey of Understanding and Resilience

Video content above is prompted by the following:

What role do you think patient voices should play in guiding future advancements in paroxysmal nocturnal hemoglobinuria (PNH) care?
How do you imagine your life might change if there were a cure for PNH in the future?

This program was made possible with support from Novartis Pharmaceuticals.

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