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Challenges for Rare Cancers

People with rare cancers and their doctors face extra challenges compared to those with more common cancers.
  • Rare cancers commonly take longer to diagnose and are more likely to be misdiagnosed.
  • Guidelines that doctors use to plan treatment will usually be based on more limited evidence or may not even exist.
  • Finding a cancer specialist with experience in managing a rare cancer may be difficult or involve travelling to specialist centres far from home.
  • Access to molecular testing or specific treatments may not be available or when available may not be reimbursed.
  • Access to clinical trials or research programs is more likely to be limited.
  • Support groups and information can be more difficult to find and access.