Description
Join us for a special Cure experience to discuss the current state of affairs for the 30 million Americans afflicted with an often-devastating rare disease. We’ll hear from world experts including patients, patient advocates, entrepreneurs, physicians, scientists, and others discussing the latest innovations, discoveries, frustrations, hopes, and fears about the nearly 7,000 rare diseases that may have impacted you or someone you know and love. We also want to hear your story.
Keynote: Jamie Heywood is an engineer and entrepreneur whose heroic efforts to save his brother Stephen from ALS launched the ALS Therapy Development Institute (ALS TDI) and founded PatientsLikeMe, one of the largest patient-generated data and patient-enabling companies in the world; and Alden Scientific, which is setting out to use AI and advanced genomic and ‘omic testing to monitor and diagnose–and to predict and hopefully prevent disease. Check out Jamie’s TED talk here. Pulitzer Prize-winning author Jonathan Weiner wrote the bestselling Thy Brother’s Keeper: A Story from the Edge of Medicine about Jamie’s attempt to save his brother.
Panel:
Moderator: Seema Kumar, CEO, Cure
Paul Kruzka, Chief Medical Officer, GenDx
Other speakers and music offering to be announced
Event Agenda:
5:30pm: Reception, wine, beer, cocktails and noshes
6:00pm: Program
Musical offering
Keynote: Jamie Heywood
Panel of Experts
Demo by GeneDX
7:00pm: Mingling, demos, and informal discussion
Books for Sale: Thy Brother’s Keeper: A Story from the Edge of Medicine, by Jonathan Weiner