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Key people at Rare Cancer Research Foundation.
The Rare Cancer Research Foundation (RCRF) develops infrastructure and initiatives designed to accelerate treatments for rare cancers. Its core offering, Pattern.org, facilitates direct tissue donation from patients to research institutions, bridging a critical gap in research material access. This approach leverages patient participation to gather invaluable data and samples, directly powering scientific discovery and therapeutic development in underserved cancer types.
RCRF was founded in 2013 by Mark Laabs. His vision for the organization stemmed from an insight into the potential of patient-powered research, recognizing the unique position of individuals with rare cancers to directly contribute to the scientific understanding of their conditions. Laabs conceived an approach that empowers patients to actively participate in the research process, thereby creating a more efficient and targeted pathway for rare cancer studies.
The organization primarily serves patients seeking to contribute to research and scientific researchers in need of biological samples for their studies. By connecting these two crucial components, RCRF aims to catalyze effective research and foster the development of new treatments. The foundation's long-term vision is to cure rare cancers by continuously innovating ways to support and accelerate scientific progress.
Key people at Rare Cancer Research Foundation.
The Rare Cancer Research Foundation (RCRF) is a 501(c)(3) nonprofit organization, not a for-profit company, dedicated to curing rare cancers through strategic investments, innovative collaborations, and patient-powered research initiatives.[1][2][3] Its mission centers on facilitating effective research and accelerating promising therapies by addressing key barriers like limited tissue samples and patient information, building infrastructure such as the Pattern.org platform for tissue donation and data sharing, and partnering with over 300 patient advocacy groups and researchers.[1][2][4] RCRF serves rare cancer patients (over 400,000 diagnosed annually in the US) and researchers by enabling direct tissue donations from 120+ hospitals, yielding 65+ research models with a 95% collection success rate, while fostering an indication-agnostic approach for scale across cancer types.[1][5]
RCRF was founded by Mark Laabs, a pioneering rare cancer patient whose personal experience inspired a patient-powered model for research acceleration.[1][2] Established around 2014 (based on Laabs' board term start), the foundation has evolved from tissue donation coordination—starting in 2017 with contributions from over 120 hospitals—into a multidisciplinary team of scientists, clinicians, and patients headquartered in Durham, North Carolina.[1][3][5][6] Pivotal moments include developing Pattern.org, supported by partners like the Chan Zuckerberg Initiative, and creating 65+ rare cancer research models, transforming patient advocacy into direct research impact.[4][5]
RCRF rides the trend of patient-driven, tech-enabled precision oncology, where digital platforms bridge gaps in rare disease research amid stagnant progress for most of the 400,000+ annual US cases lacking effective treatments.[2][5] Timing aligns with advances in biobanking, AI-driven data commons, and post-pandemic emphasis on decentralized trials, amplified by market forces like rising biotech investments in underserved cancers and philanthropic support (e.g., Chan Zuckerberg).[4] It influences the ecosystem by democratizing tissue access—historically siloed—fostering cross-institution models (95 US partners) and interdisciplinary teams, thus accelerating therapies and inspiring similar nonprofits in orphan diseases.[1][3][5]
RCRF is poised to expand its Pattern Data Commons and "coming soon" patient tools for trials and specialists, potentially scaling to thousands more models amid growing demand for personalized rare cancer solutions.[2][5] Trends like AI integration for tissue matching and global biobank networks will shape its path, evolving its influence from US-centric donations to international force-multiplier in oncology research. This patient-origin story positions RCRF to redefine cures, turning individual hope into systemic breakthroughs.[1][4]
