BioHub, a nonprofit research organization funded by the Chan Zuckerberg Initiative, announced Thursday that it will launch a new round of funding this fall through the Rare as One Network. This is Rare As One’s fourth grant to the rare disease community. The company has committed more than $150 million to rare disease initiatives through four funding cycles.
“When I was in pediatrics residency, I sat across from families who had done everything right: researching, advocating, fighting for answers. And I had to say that medicine just doesn’t know yet. Those families never left me. “We founded ONE because we believe that patients are not bystanders of scientific progress; they are among its most powerful drivers,” Priscilla Chan said in a statement to CNBC.
The application period for the fourth cycle will likely start in October, but the official date has not yet been announced. The award is primarily aimed at groups focused on rare lung and immune diseases, as well as rare cancers.
The announcement also expands Biohub’s partnership with Every Cure, a nonprofit organization founded by Dr. David Fagenbaum to use artificial intelligence to identify opportunities to repurpose existing medicines for diseases for which there are few or no treatment options. Biohub already serves as a foundational philanthropic supporter of Every Cure. Through this new partnership, selected patient organizations will partner with Every Cure to advance promising drug repurposing opportunities identified from the AI-driven platform, with the goal of incorporating the results and turning them into patient-centered research programs.
“We are excited about our growing partnership, from our first grant to begin building our AI platform in 2023 to now,” Fajenbaum said. “There is no better organization or team to work 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 Cure
This is all part of a broader push by Chan and Mark Zuckerberg to further incorporate AI into their ambitious quest to eradicate disease. Biohub recently launched the Virtual Biology Initiative, a $500 million effort to build predictive models of cells. As part of its announcement, Biohub also introduced a proprietary AI model designed to accelerate drug discovery.
“In the seven years since we launched, 94 patient-led organizations have built research networks, initiated clinical trials, and in some cases even sponsored the trials themselves,” Chan said. “What once seemed impossible is becoming reality. And now, as AI accelerates what is scientifically possible, we are raising the ceiling of what is possible for families every day,” she added.
For Biohub’s Rare As One program, this announcement marks another milestone in the transformation of our relationship with the rare disease advocacy community. To date, Biohub says its supporting organizations have engaged with more than 320,000 patients and community members, along with 26,000 researchers. These organizations demonstrate how advanced and sophisticated patient-led advocacy organizations have become over the past decade, with two-thirds of Rare As One-funded organizations building research assets and tools to advance the understanding of rare diseases, and more than half contributing to the development and initiation of clinical trials.
“We founded the Rare as One Project because we recognized that patients play a critical role in scientific discovery,” Tania Simoncelli, Biohub’s vice president of translational science, said in a blog post. “What we have witnessed over three cycles is even more powerful than we could have imagined. When patients, researchers, and clinicians work together, we are not only accelerating timelines but reshaping the paradigm of biomedical research.”
Sunita Malepati, a member of the CNBC Cures Advisory Board and vice chair of the CACNA1A Foundation, the group that won the grant from Biohub, said being selected for the program has completely changed what her group can achieve. “When we joined the network, we were a young organization with a bold vision, but limited infrastructure. Through program funding, training, and a peer community, we were able to build the organizational capacity needed to actively advance our research,” she said.
Malepati said the funding helped establish research partnerships and organize the patient and scientific community around CACANA1A-related disease, a rare, lifelong neurological and genetic disorder. “Rare as One recognized early on that patient-led organizations can be powerful catalysts for scientific progress, and their belief in our community is helping accelerate hope for tangible treatments,” she added.
Biohub hopes that by combining its growing presence in the rare disease community with its growing investment in AI-based medical technology, these specific treatments will begin to be available sooner than ever before, allowing patients seeking answers to get the help they need.
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Correction: This article has been updated to show that Rare As One Network has committed more than $150 million to rare disease initiatives across four total funding cycles.
