Externally-Led PFDD Meeting

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First Name
Last Name
Welcome Emily Milligan 00:00-5:00
Opening Remarks Celia M. Witten, PhD, MD 6:05-14:00
Clinical Overview of Barth Syndrome Colin Steward, PhD, FRCP, FRCPCH 15:00-42:00
Introduction to Barth Syndrome and One Family's Experience with BTHS Kate McCurdy 42:05-1:07
Introduction and Overview of Meeting James Valentine, JD, MHS 1:07-1:38
Panel 1 Symptoms and Daily Impacts
Peter V. Affected Individual 1:38-1:43:43
Jasmine C. Parent of Affected Individual 1:43:44-1:50:57
Kevin B. Affected Individual 1:51:07-1:55:28
Jacob W. Affected Individual 1:55:38-2:00:03
Nicole D. Parent of Affected Individual 2:00:15-2:05:32
Audience & Remote Polling James Valentine, JD, MHS 2:06:11-2:19:11
Moderated Audience Discussion James Valentine, JD, MHS 2:19:13-2:59:48
Video of BTHS Individual
2:59:50-3:03:04
Panel 2 Current and Future Approaches to Treatments
Nick D. Affected Individual 3:16:40-3:23:12
Amanda M. Parent of Affected Individual 3:23:20-3:29:23
Darryl B. Affected Individual 3:29:28-3:35:38
John W. Affected Individual 3:35:51-3:40:52
Kevin W. Parent of Affected Individual 3:41:02-3:49:15
Audience & Remote Polling James Valentine, JD, MHS 3:49:50-4:50:10
Moderated Audience Discussion James Valentine, JD, MHS 4:13:35-4:50:10
Closing Comments Shelley Bowen 4:50:20-4:49:15
Closing Remarks Elizabeth Hart, MD 4:59:28-5:06:35

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