Patient Advocacy Summit 2019

November 6, 2019 8:00 AM - 4:30 PM

Marriott Boston Cambridge, 50 Broadway, Cambridge, Massachusetts 02142 USA

Add to Calendar 11/6/2019 8:00:00 AM 11/6/2019 4:30:00 PM Patient Advocacy Summit 2019 Marriott Boston Cambridge, 50 Broadway, Cambridge, Massachusetts 02142 USA

MassBio's Patient Advocacy Summit brings together the patient advocacy community to showcase best practices and cutting-edge examples of how life sciences companies can more fully incorporate the patient voice into the work they do—not just approaching regulatory applications or at commercialization, but throughout the drug development cycle.

This year we'll explore competing views on what value therapies bring to various stakeholders, what a cure is worth to patients and society, how to improve the clinical trial experience for patients, and more. We will also have a frank discussion about patient access in the era of transformative therapies, and you’ll hear directly from patients on what this means to them.

The program includes panel discussions, case study presentations(spotlighting industry/patient partnerships), an inspirational keynote address, as well as a networking lunch and cocktail reception.

See sponsorship opportunities here, or contact Laura Rudberg.

Professor of Neurology, Harvard Medical School & Assoc. Neurologist in Chief, Children's Boston
Basil T. Darras, MD, is the Joseph J. Volpe Professor of Neurology at Harvard Medical School. At Boston Children’s Hospital, Dr. Darras is Associate Neurologist-in-Chief and Chief of the Division of Clinical Neurology. He is Director of Boston Children’s Neuromuscular Program, which includes one of the oldest and most active Muscular Dystrophy Association clinics in the country. Dr. Darras is a pediatric neurologist with advanced training and certification in human genetics and neuromuscular medicine. His primary research focus is in the field of pediatric neuromuscular disorders. His specific research interests and major publications have focused on the molecular genetics, diagnostics, and therapeutics of Duchenne muscular dystrophy, Becker muscular dystrophy, spinal muscular atrophy (SMA), and other myopathies, and on defining the indications for new diagnostic methodologies in the evaluation of children with pediatric neuromuscular diseases. His clinical focus is the care of children with neuromuscular conditions originating from inherited or acquired conditions of the motor unit. He is Principal Investigator for the Boston Children’s site of NIH’s NeuroNEXT clinical research network, for the SMA Foundation’s Spinal Muscular Atrophy PNCR Network, and for trials testing novel treatments for SMA, including the clinical trials for Spinraza® and Zolgensma®, recently approved by the FDA as the first treatments for SMA. He is frequently invited to lecture at national and international meetings on topics related to his expertise in neuromuscular disorders and genetics. He has published over 190 original reports in peer-reviewed journals and over 80 chapters, reviews and editorials, and is Editor-in-Chief for the second edition of Neuromuscular Disorders of Infancy, Childhood, and Adolescence: A Clinician’s Approach, published by Elsevier in 2015.

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