Yesterday, I spoke at the #RareDiseaseSummit about a topic that’s deeply personal to me, how patient-driven investment can accelerate drug development for rare diseases. When my brother was diagnosed with chronic pancreatitis, he was told there was no treatment, no cure, and no real investment in finding one. That wasn’t good enough. So, in 2017, we launched Mission: Cure, and in 2019, we took a bold step: we created Mission Cure Capital, an impact investing initiative to fund promising pancreatitis therapies. Mission Cure Capital has raised and invested $1.3M across 6 projects, supporting early-stage biotech companies and academic research. We’ve learned a lot along the way, including that biotech investors take patient organizations seriously when we put skin in the game. Key takeaways from my session yesterday: ? Impact investing can bridge the “valley of death”—helping rare disease therapies reach proof of concept ? Biotech companies value patient organizations as investors—it signals credibility to others in the field ? Patient groups CAN drive investment and innovation in drug development—even small disease organizations. This is just the beginning. Rare disease organizations have a unique opportunity to reshape the future of treatment development, and I’m proud to be part of that conversation today.
Chief of Staff and Strategy, Foundation For Sarcoidosis Research/ Mentor/ Lifelong Learner/ Rare and Chronic Disease Advocate/ Nurturer of Hope
Funding the Fight Patient Power in Driving Rare Disease Investment Chelsey Hathaway McCarthy Megan Golden Kari Luther Rosbeck Nasha Fitter Informa Connect #RareDiseaseSummit The DDX3X Foundation Mission: Cure TSC Alliance FOXG1 Research Foundation