Voices from the DLB Community
Sharing lived experiences with the FDA
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In October 2024, LBDA in collaboration with the Alzheimer's Association hosted the first-ever Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on dementia with Lewy bodies (DLB). The EL-PFDD is a unique opportunity for the FDA, drug developers and other key stakeholders to hear directly from people living with a disease and their care partners.
Watch the EL-PFDD meeting on DLB
The EL-PFDD Meeting on DLB focused on insights from people living with DLB and current or former care partners in two sessions: DLB Symptoms & Daily Impacts and Current & Future DLB Treatments. Watch it on-demand, and share with your family, care partners and health care providers.
Coming Soon: The Voice of the Patient Report
As an outcome of the EL-PFDD meeting, LBDA will publish the Voice of the Patient Report. This landmark report will include all the perspectives and shared experiences from the DLB community captured before, during and after the meeting, as well as a detailed summary and analysis of the data and insights. This report will be shared with the FDA, clinical researchers, drug developers and other key stakeholders as an important tool to guide and inform the development of better treatment options for those living with DLB. It will be free for you to read, and share with your family, care partners and health care providers.
To receive updates on the Voice of the Patient Report sign up for Lewy Digest.
Thank You to Our Partner and Sponsors
Collaborative Partner
Diamond Sponsors
Gold Sponsors
ACADIA Pharmaceuticals
Eisai Inc
Novartis
Silver Sponsors
Amprion
Cognition Therapeutics, Inc.
Learn about LBD
Educational resources to assist individuals with LBD, their families and healthcare providers.
