On October 28, 2024, the Foundation for Sarcoidosis Research hosted the Externally-Led Patient Focused Drug Development Meeting (EL-PFDD), an interactive, virtual, public meeting that provided patients and caregivers a unique opportunity to share about their unmet needs, the quality of life impacts of sarcoidosis, and preferences in respect to symptom management and the development of new therapies.
The outcome of this impactful meeting is captured in a comprehensive 50-page Voice of the Patient Report, now available to read. This report reflects the experiences, insights, and priorities shared by the sarcoidosis community during the meeting, ensuring that their voices continue to guide the future of research and treatment.
This report is essential to amplify the voices of patients and caregivers, offering a deeper understanding of the real-world impact of sarcoidosis on their daily lives. By highlighting these lived experiences, the report provides critical insights for healthcare providers, researchers, and drug developers to prioritize what matters most to patients living with sarcoidosis. It also empowers patients and caregivers by ensuring their needs and priorities are at the center of therapeutic advancements.
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