Description
Join us on the iconic rooftop of Cure for Rare Disease Day when we launch CureX’s inaugural event series, where we will share stories and show our stripes together. Don’t miss this important discussion on how we can move the needle in finding safe and effective cures for the 30 million people in the U.S. afflicted with a rare disease.
Featuring Keynote by Jamie Heywood, founder of PatientsLikeMe and the ALS Therapy Development Institute.
Musical performance, and Demos from GeneDx and MyMee.
Preview Undiagnosed, a documentary film directed by Katia Moritzand Nicholas Miller
Panel of industry experts, entrepreneurs, and patients
Jamie Heywood, CEO, Alden Scientific, Founder of PatientsLikeMe and the ALS TDI research foundation
Paul Kruszka, M.D., CMO of GeneDx
Mette Dyhrberg, Founder & CEO, Mymee
Seema Kumar, CEO of Cure
Agenda
5:30 p.m. Networking Reception with Spirits and Noshes
6:00 p.m. Keynote speaker Jamie Heywood: “Bio Industrial Revolution Rising: Are You Ready?”
6:30 p.m. Panel Discussion and Q&A
7:00 p.m. Demonstration of MyMee, an app that helps auto-immune patients identify triggers for attacks and to control symptoms
7:15 p.m. Film Trailor: Undiagnosed
7:30 p.m. End
What You Can Expect
First-hand stories and experiences from our expert panelists and keynote speaker Jamie Heywood, a brother, friend, MIT-engineer, CEO, Founder, TED speaker and rare disease advocate who will share his journey after finding out that his brother, Stephen, had the terminal illness ALS. Jamie Heywood founded the ALS Therapy Development Institute, the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatment outside of academia and for-profit organizations. They were the first to publish research on the safety of using stem cells in ALS patients. Jamie has raised more than $50 million dollars for ALS and continues to serve the ALS community.
About CureX
CureX is a purposefully curated event series on Cutting Edge Conversations About Your Health. This elevated series includes experiences that bring together the healthcare community in unexpected and creative ways to advance healthcare.
REGISTER NOW: https://www.eventbrite.com/e/we-are-all-unique-a-frank-discussion-about-rare-diseases-tickets-553842426607
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