On March 3 in New York City, CNBC will host the inaugural CNBC Cures Summit, bringing together leaders across industry, investment, and policy to focus on rare disease and what it will take to move progress from promise to real-world impact.
As the only patient advocacy organization represented on stage, FAST will bring a patient-led lens to conversations that shape what gets developed, funded, and ultimately delivered.
FAST leaders Dr. Allyson Berent, chief science officer and AS²Bio co-founder, and Mike Hanrahan, entrepreneur, investor and vice chair of FAST’s board of directors , will join Becky Quick on stage for a featured conversation on how venture philanthropy and patient-and family-led models are reshaping the rare disease drug development ecosystem, and what it take to build the infrastructure that helps science advance and attracts the support needed to carry it into the clinic.
CNBC recently launched CNBC Cures, a new initiative aimed at elevating rare disease stories and accelerating solutions for the 30 million Americans living with rare diseases.
What FAST will bring to the stage
Allyson and Mike will share what patient- and family-led advocacy looks like when it moves beyond awareness to execution. The discussion will highlight how FAST, through its venture philanthropy model and alongside AS²Bio, a drug development accelerator, have helped build a deep pipeline for Angelman syndrome therapeutics, by investing early, building shared tools, and strengthening the foundation the programs needs to advance from preclinical work toward the clinic.
They will also focus on the less visible work that determines whether promising science can become a real development path: aligning outcomes that are meaningful and measurable, enabling trail readiness, and building reusable infrastructure so the field can move faster without starting from zero each time.
They will also speak to how patient- and family-led models can reduce bottlenecks that slow therapeutic progress, including:
Shared infrastructure: building reusable tools and pre-competitive collaborations so programs can build on what’s already known, avoiding silos of knowledge.
Endpoints and biomarkers in complex clinical trials: aligning on endpoint and biomarker strategy that is both meaningful and measurable to those living with the disease, especially in rare and challenged populations where the clinical unmet need is vast.
Funding and trial feasibility: helping all stakeholders understand the opportunities, the need, and the infrastructure that has been created for success.
Access realities: keeping patient and family challenges at the forefront of the conversation to ensure unmet needs are met with a global strategy for patient identification, readiness, and awareness.
That is what patient and family led looks like when it’s built for execution: a model designed to convert scientific promise into credible development paths. Register to watch the CNBC Cures Summit livestream: https://www.cnbcevents.com/cures/
Connect with FAST
To connect with FAST about patient-led advocacy, research, or collaboration, please contact us.