Patient Voices: Shaping the Future of PNH Care
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.
EP: 1.Recognizing PNH and Initial Challenges
EP: 2.Empowering Patients in Treatment Planning
EP: 3.Navigating Treatment Options: Understanding Risks and Benefits
EP: 4.Decoding Symptoms: When Fatigue Speaks Volumes
EP: 5.Starting Treatment: Insights and Initial Experiences
EP: 6.Living With PNH: Long-Term Management and Caregiver Support
EP: 7.Patient Voices: Shaping the Future of PNH Care
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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