The Kidney Cancer Association is proud to announce an exciting collaboration with the Rare Cancer Research Foundation (RCRF) through its initiative, Pattern.org, that promises to accelerate advancements in the research and treatments of rare kidney cancers.
Pattern.org is a patient-driven platform that empowers rare cancer patients to consent to donate their excess, fresh tumor tissue to support scientific research. Pattern.org has partnerships in place with institutions such as MD Anderson Cancer Center and Emory University/Aflac Cancer Center. In working with the KCA, more people with rare kidney cancer types have the opportunity to contribute to research efforts.
The KCA is a global kidney cancer organization that drives research and empowers patients and families through innovative resources. In the past year, the KCA funded millions of dollars in research and education, impacted thousands of families through patient resources, benefited hundreds of patients through patient assistance programs, and advocated to Congress for more federally funded kidney cancer research.
The collaboration between RCRF and KCA represents a pivotal moment in the rare kidney cancer research landscape.
Barbara Van Hare, President of Pattern.org writes, “We’re excited to partner with the KCA to leverage our collective multidisciplinary expertise and shared commitment to advancing the understanding of rare kidney cancers. It’s inspiring that, through our Pattern.org initiative, kidney cancer patients nationwide now have the opportunity to actively support and contribute to research studies conducted outside of their primary treatment centers, potentially resulting in new insights and therapeutic options.”
“People diagnosed with rare kidney cancers begin with a huge handicap in terms of what is understood about their disease and what resources and treatments are available to them,” said Gretchen E. Vaughan, KCA’s President and CEO. “Our partnership with RCRF/Pattern.org is a major step towards empowering patients to become active participants in research that will advance science and we’re proud to join forces in this important endeavor.”
RCRF and Pattern.org work alongside MD Anderson Cancer Center and Emory University/Aflac Cancer Center, which are dedicated to generating models, exploring cell lines, and making genomic insights for rare kidney cancers, all of which will lead to a better understanding of how these cancers develop and help create new treatment options. The research projects focus on a broad spectrum of rare kidney cancer subtypes including chromophobe RCC, renal medullary carcinoma (RMC), translocation RCC, papillary RCC, and others. In contrast to clear cell RCC, the most common type of kidney cancer, these rare types together represent about 20-25% of all kidney cancer diagnoses.
Rare kidney cancer types are typically underfunded and understudied and people with these diagnoses face more challenges when it comes to treatment options, access to clinical trials, and maintaining good quality of life.
Katie Coleman, who recently joined RCRF/Pattern.org as the Product and Engineering Lead, is a key contributor to the partnership between RCRF and the KCA as a rare kidney cancer survivor herself. Through her new role, her ongoing advocacy, and the work of her own organization, the Chromophobe and Oncocytic Tumor Alliance (COA), a KCA Affiliate Partner organization, Coleman has demonstrated leadership in and dedication to advancing rare kidney cancer research.
This partnership’s strength lies in the collective expertise and commitment of RCRF and Pattern.org, KCA, partnering academic institutions, and patient advocates like Coleman. Together, we will continue to push the boundaries of knowledge and treatment options for rare kidney cancers, offering hope to patients and their families worldwide.
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About the Rare Cancer Research Foundation and Pattern.org
The Rare Cancer Research Foundation is a 501(c)3 nonprofit organization dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies. The flagship initiative of the Rare Cancer Research Foundation is Pattern.org, a patient-driven platform that empowers rare cancer patients to consent to donate their excess tumor tissue to support and improve research.
About the Kidney Cancer Association
The Kidney Cancer Association is a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education in order to be the universal leader in finding the cure for kidney cancer. Founded in 1990 by Eugene P. Schonfeld and a small group of patients and doctors in Chicago, Illinois, the KCA has grown into an international non-profit organization based in Houston, Texas. The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer.
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