Chan Zuckerberg Initiative Commits $1 Million to Rare Cancer Research Foundation for Groundbreaking Initiatives
The Rare Cancer Research Foundation (RCRF) is proud to announce a generous $1 million funding commitment from the Chan Zuckerberg Initiative (CZI) to advance critical initiatives in rare cancer research. This transformative investment will be allocated towards two key priority areas: enhancing data infrastructure and supporting patient-directed custodial biobanking.
Rare cancers, though individually uncommon, collectively impact a significant portion of the population. The partnership between CZI and RCRF underscores a shared commitment to addressing the unique challenges posed by rare cancer patients and underscores the potential for innovative solutions that prioritize patient empowerment.
Data Infrastructure: Paving the Way for Informed Decision-Making
A substantial portion of the funding will be dedicated to bolstering data infrastructure, laying the foundation for a comprehensive and accessible repository of information related to rare cancers. Through their Pattern.org program and the evolution of its capabilities, RCRF aims to empower individual patients with clinically actionable information, enabling them to make informed decisions about their treatment options and care.
Dr. Marshall Thompson, President of RCRF, expressed excitement about the potential impact of this initiative: "CZI's funding creates a groundbreaking shift in rare cancer research and enables us to build a collaborative, open-source platform that everyone in the field can benefit from.y. Informed decision-making is a cornerstone of effective healthcare, and this investment will undoubtedly improve the lives of those affected by rare cancers."
Patient-Directed Custodial Biobanking: Putting Patients at the Center
The second focus area of the funding will be directed towards patient-directed custodial biobanking. This innovative approach ensures that patients have a say in how and where their tissue is used for research purposes. By creating a patient-centered platform, RCRF aims to empower individuals to actively participate in advancing rare cancer research, fostering a sense of ownership over their contributions to scientific progress.
“We at the Chan Zuckerberg Initiative believe that patients should have a central role in developing solutions and creating change, which is why we are thrilled to support the Rare Cancer Research Foundation,” said Tania Simoncelli, Vice President of Science in Society at CZI. “Their scale and expertise are at the forefront of this patient-centered movement to create this transformative initiative.”
Empowering the Patient Community to Lead: A New Chapter in Rare Cancer Research
These groundbreaking initiatives not only enhance the landscape of rare cancer research but also position the patient community as leaders in driving advancements. Through the collaborative efforts of RCRF and CZI, the $1 million funding will not only enable data-rich decision-making but also provide a platform for patients to actively influence the trajectory of rare cancer research nationwide.
This transformative partnership between the Chan Zuckerberg Initiative and the Rare Cancer Research Foundation represents a significant step forward in the quest for treatment and care for rare cancers. The shared commitment to patient empowerment, innovative research, and community-driven progress underscores the potential for meaningful change in the landscape of rare cancer research.
About the Rare Cancer Research Foundation (RCRF)
The Rare Cancer Research Foundation exists to build cancer research infrastructure that enable patients, researchers, and doctors to partner more deeply in the search for better cancer treatments and, ultimately, cures. The mission of the Rare Cancer Foundation (RCRF) is to cure rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies.
About the Chan Zuckerberg Initiative
The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Our mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit chanzuckerberg.com.
