Biohub, a nonprofit research organization funded by the Chan Zuckerberg Initiative, announced Thursday that it will open another round of funding through the Rare As One Network this fall. It marks the fourth round of rare disease community grants from Rare As One, which has contributed more than $150 million to rare disease programs through four funding rounds.
“When I was a resident of children, I lived across from families who did everything right – researched, encouraged, fighting for answers – and I had to tell them that medicine did not know yet. Those families did not leave me. We created Rare As One because we believe that patients are not spectators of scientific progress – they are among its most powerful drivers,” said Priscilla CNBC in a statement.
The application window for the fourth round will open in October, although an official date has not yet been announced. The awards will go to groups that specialize in lung and rare immune diseases, as well as rare cancers.
The announcement also extends Biohub’s partnership with Every Cure, a non-profit organization founded by Dr. David Fajgenbaum uses artificial intelligence to identify opportunities to repurchase existing drugs for diseases with few or no treatment options. Biohub already serves as a primary sponsor of All Cure. Through the new partnership, selected patient organizations will work with All Cure to develop promising drug recovery opportunities identified in its AI-driven environment, with the goal of taking those findings and turning them into patient-centered research programs.
“I’m excited about our extended partnership – from getting the first grant to start building our AI platform in 2023, to where we are now,” Fajgenbaum said. “There is no better organization or team to work with in this shared mission.”
Dr. David Fajgenbaum, co-founder of Every Cure, a non-profit organization focused on drug repurchasing.
Courtesy of All Cure
It’s all part of a broader plan from Chan and Mark Zuckerberg to further integrate AI into their quest to end disease. Biohub recently launched its Virtual Biology Initiative – a $500 million effort to build a predictive model of the cell. As part of that announcement, Biohub also unveiled its AI model designed to accelerate drug discovery.
“In the seven years since we started, 94 patient-led organizations have formed research networks, started clinical trials, and in some cases are now funding those trials themselves,” Chan said. “What once felt impossible is happening. And now, as AI accelerates what is scientifically possible, every day we are raising the bar for what is possible for families,” he added.
For Biohub’s Rare As One program, this announcement marks another milestone in what has been a transformative 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. Those organizations have shown how much patient-led advocacy groups have grown and developed over the past decade, as two-thirds of groups have received funding for Rare As One building research equipment and tools to help accelerate understanding of rare diseases, and more than half have participated in the development and initiation of clinical trials.
“We created the Rare As One Project because we realized that patients play an important role in scientific discovery,” said Tania Simoncelli, Biohub’s vice president of translational science, in a blog post. “What we’ve seen in three cycles is much more powerful than we imagined. Patients, researchers, and physicians working together aren’t just speeding up timelines: they’re reshaping the paradigm of biomedical research.”
Sunitha Malepati, a member of the CNBC Cures Advisory Board and vice president of the CACNA1A Foundation – the group that was awarded the money from Biohub – said being selected for the program completely changed what her group was able to achieve. “When we joined the network, we were a small organization with a bold vision but limited infrastructure. Through program funding, training, and a community of peers, we were able to build the organizational capacity needed to conduct research,” he said.
Malepati said the money helped establish research partnerships and organize the patient and scientific communities about CACANA1A-related disorders, which are a group of rare, neurological and genetic conditions. “Rare As One recognized early on that patient-led organizations can be powerful catalysts for scientific progress, and their belief in our community has helped accelerate hope for tangible treatments,” he added.
By combining its growing presence in the rare disease community with its growing investment in AI-based medical technology, Biohub hopes that those virtual treatments start coming sooner than ever before – and that patients desperate for answers can start getting the help they need.
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Correction: This story has been updated to reflect that the Rare As One Network has committed more than $150 million to rare disease programs through a total of four funding rounds.
