Chan Zuckerberg Biohub to open new rare disease funding round
Biohub, a nonprofit research organization funded by the Chan Zuckerberg Initiative announced on thursday It said it would raise a new round of funding through the Rare As One Network this fall. This represents the fourth round of donations to the rare disease community from Rare As One, which has committed more than $150 million to rare disease initiatives over four funding cycles.
“When I was a pediatric resident, I would sit across from families who were doing everything right — investigating, advocating, fighting for answers — and I would have to tell them that medicine didn’t know it yet. These families never abandoned me. We founded Rare As One because we believe that patients are not bystanders to scientific progress — they are among the strongest drivers of that progress,” Priscilla Chan said in a statement to CNBC.
The application window for the fourth phase will likely open in October, but no official date has been announced yet. The awards will primarily target groups focused on rare lung and immune diseases, as well as rare cancers.
The announcement also comes from Biohub’s Dr. It is also expanding its partnership with Every Cure, the nonprofit founded by David Fajgenbaum. This organization uses artificial intelligence to identify opportunities to repurpose existing drugs for diseases for which there are few or no treatment options. Biohub currently serves as Every Cure’s primary philanthropic supporter. Through the new collaboration, select patient organizations will partner with Every Cure to advance promising drug repurposing opportunities identified from its AI-driven platform and translate these findings into patient-centered research programs.
“I am excited about our expanding partnership, from the initial grant to us starting to build our AI platform in 2023,” Fajgenbaum said. he said. “There is no better organization or team to work with on this shared mission.”
Dr. David Fajgenbaum is one of the founders of Every Cure, a nonprofit organization focused on drug repurposing.
Courtesy of Every Treatment
It’s all part of Chan and Mark Zuckerberg’s broader efforts to further incorporate artificial intelligence into their ambitious quest to eliminate disease. Biohub recently launched the Virtual Biology Initiative, a $500 million effort to create a predictive model of the cell. As part of this announcement, Biohub also introduced its own AI model designed to accelerate drug discovery.
“In the seven years since we launched, 94 patient-led organizations have established research networks, initiated clinical trials, and in some cases are now sponsoring these trials themselves,” Chan said. “What once seemed impossible is happening. And now, with AI accelerating what is scientifically possible, we are raising the ceiling on what is possible for families every day,” he added.
This announcement for Biohub’s Rare As One program marks another milestone in a transformational relationship with the rare disease advocacy community. To date, Biohub says the organizations it supports have engaged more than 320,000 patients and community members, as well as 26,000 researchers. These organizations demonstrated how advanced and sophisticated patient-led advocacy groups have become over the past decade; Two-thirds of groups receiving funding from Rare As One are creating research assets and tools to help accelerate understanding of rare diseases, and more than half are contributing to the development and initiation of clinical trials.
“We founded the Rare As One Project because we saw that patients play a critical role in scientific discovery,” Tania Simoncelli, vice president of translational science at Biohub, said in a blog post. “What we are witnessing over three cycles is something much more powerful than we imagined. Patients, researchers, and clinicians working together are not just accelerating timelines; they are reshaping the biomedical research paradigm.”
Sunitha Malepati, a member of the CNBC Cures Advisory Board and vice president of the CACNA1A Foundation, a group that receives grants from Biohub, said being selected for the program completely transformed what her group could accomplish. “When we joined the network, we were a young organization with a bold vision but limited infrastructure. Thanks to the program’s funding, training and peer community, we were able to build the institutional capacity needed to actively support research,” he said.
Malepati said the money helps establish research partnerships and organize patient and scientific communities around CACANA1A-related disorders, a group of rare, life-long neurological and genetic disorders. “Rare As One recognized early that patient-led organizations could be powerful catalysts for scientific progress, and their belief in our community helped raise hope for tangible treatments,” he added.
Biohub hopes that by combining its growing presence in the rare disease community with its increasing investment in AI-based medical technologies, these tangible treatments will begin to arrive faster than ever before and patients desperate for answers can begin to receive the help they need.
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Correction: This story has been updated to show that Rare As One Network has committed more than $150 million to rare disease initiatives through a total of four funding cycles.
