Past CureX – We Are All Unique: A Frank Discussion about Rare Diseases
Tuesday, February 28
Presented by Seema Kumar, CEO, Cure
Thank you for joining 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 heard 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.
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 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
Kammy Moalemzadeh, Founder & CEO of Arcadia Investment Partners
Lauren Ruotolo, Author, Content Creator, Keynote Speaker, and Disability Advocate
Seema Kumar, CEO of Cure