The Patient Experience
Tuesday, May 3, 2022
The role of patients and their experiences are critical as the promise of GCT unfolds. This panel will discuss the patient experience and explore the challenges different patient populations face, both in rare diseases and more common conditions. Panelists will also discuss financial considerations, clinical trial access, and the role of advocacy groups in GCT.
- Moderator:
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- Merit Cudkowicz, MD
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- Chair, Dept of Neurology, MGH
- Julieanne Dorn Professor of Neurology, HMS
- Panelist:
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- James Beck, PhD
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- CSO, Parkinson’s Foundation
- Monica Coenraads
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- CEO, Rett Syndrome Research Trust
- Annie Ganot
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- VP, Head of Patient Advocacy, Solid Biosciences
- Staci Kallish, DO
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- President, Board of Directors, National Tay Sachs and Allied Diseases
- Medical Geneticist, Associate Professor of Clinical Medicine, Penn Medicine
- Rebecca Oberman, PhD
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- Executive Director, Mucolipidosis Type IV (ML4) Foundation