HBI is excited to partner with filmmaker Lainey Moseley to present the premiere of the documentary Rare: A Rare Disease Revolution on Thursday, December 12th.
The screening begins at 5:00pm and will be followed by a panel discussion at 6:30pm and a reception at 7:15pm. Registration is required.
Panel Discussion:
Rare Disease Revolution: What Comes Next?
Moderated by:
Wendy Erler
Vice President, Patient Experience,
Alexion, AstraZeneca Rare Disease
Panelists:
Wendy Chung, MD, PhD
Professor of Pediatrics, Harvard Medical School
Cat Lutz, PhD, MBA
Vice President, Rare Disease Translational Center, The Jackson Laboratory (JAX)
Pat Furlong
Founding President and CEO, Parent Project Muscular Dystrophy (PPMD)
Andrew Lo, PhD
Charles E. and Susan T. Harris Professor, MIT Sloan School of Management
Timothy Yu, MD, PhD
Associate Professor of Pediatrics, Harvard Medical School
About the film:
Directed by Lainey Moseley and John Beder, RARE tells the story of 6 rare disease families’ diagnostic and cure odysseys fighting for gene and cell therapies against the back drop of an indifferent healthcare system and a ticking clock. From a soldier to a musician, from an immigrant family to a mother of twins, meet the unsuspecting heroes waging war against rare diseases. Love drives change in this rare disease revolution, where parents become scientists and warriors who wage battles in laboratories, Congress, and their own homes. These families are driving scientific breakthroughs and championing their children’s cause, advancing scientific discovery, and driving hope – and cures – for countless others.