EPISODE · Jun 12, 2019 · 26 MIN
Program Seeks to Drive Collaborative Research Model Among Rare Disease Groups
from RARECast
For rare disease patient groups seeking to drive research toward the development of therapies, many obstacles exist. By setting an overarching research agenda, driving collaborations among researchers, and sharing what is learned, patient groups are getting the most out of limited budgets and accelerating the time it takes to develop new treatments. The newly announced Rare As One Project from the Chan Zuckerberg Initiative seeks to help rare disease patient organizations apply the collaborative research model and improve on it. We spoke to Tania Simoncelli, science policy director of the Chan Zuckerberg Initiative, about the program, how it works, and what the organization hopes the long-term effects of its efforts will be.
What this episode covers
For rare disease patient groups seeking to drive research toward the development of therapies, many obstacles exist. By setting an overarching research agenda, driving collaborations among researchers, and sharing what is learned, patient groups are getting the most out of limited budgets and accelerating the time it takes to develop new treatments. The newly announced Rare As One Project from the Chan Zuckerberg Initiative seeks to help rare disease patient organizations apply the collaborative research model and improve on it. We spoke to Tania Simoncelli, science policy director of the Chan Zuckerberg Initiative, about the program, how it works, and what the organization hopes the long-term effects of its efforts will be.
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Program Seeks to Drive Collaborative Research Model Among Rare Disease Groups
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