Rare Tumor

Rare tumors include a wide range of very rare cancers, including tumors of the eye (retinoblastoma), lung (pleuropulmonary blastoma), adrenal gland (adrenocortical carcinoma), thyroid, colon, skin (melanoma), and throat (nasopharyngeal carcinoma). Some occur almost exclusively in very young children, while others are well-known adult cancers that only rarely develop in children — meaning little data exists on pediatric-specific treatment.

While these diseases combined account for more than 10% of all cancers in children, they are individually rare, with very few children diagnosed with each tumor type annually. Limited patient populations make it extremely difficult to run rigorous clinical trials that lead to improved treatments, so outcomes for these patients have not improved at the pace of more common pediatric cancers. Broad collaboration, creative study designs, and molecular testing are essential tools for making progress.

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COG’s Work in Rare Tumor

COG’s Rare Tumor Committee facilitates the study of very rare pediatric tumors at scale by coordinating trials across the COG network. Across all tumor types, the committee is working to expand molecular tumor profiling through the NCI’s Molecular Characterization Initiative opens in a new tab, ensuring all children with rare tumors have access to cutting-edge tumor testing — regardless of where they are treated.

Through trials for retinoblastoma (eye cancer), nasopharyngeal carcinoma, and pleuropulmonary blastoma, the Committee is refining how treatment intensity is matched to patient risk — decreasing therapy for those likely to be cured by surgery alone, while intensifying treatment for patients with more aggressive diseases. Genetic testing is being applied to further personalize these approaches.

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Rare Tumors: Key Statistics

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    Survival rate of patients with rare tumors, increased from 60.2% between the 1970s and 2010s.

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    The survival rate for children with retinoblastoma confined to the eye.

Recent Publications

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It feels good to know more kids might have the same opportunity to get treated with [the same drug I received] – and not have to lose their hair and feel sick all the time.

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COG Member Institutions

COG’s 220+ member institutions study and treat children and adolescents with cancer across a global network. These sites support patients from diagnosis through treatment and beyond, connecting families to clinical trials and specialized care closer to home.

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News from COG

As the world’s largest pediatric cancer research network, COG drives breakthroughs in treatment and improves outcomes for children with cancer. Explore the latest news and stories from across our global community.

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The future for children with rare tumors is shaped by today’s research.

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