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MyPART - My Pediatric and Adult Rare Tumor Network
 

About Rare Cancers

Rare cancers are those that affect fewer than 40,000 people per year in the U.S. As a group, they make up just over a quarter of all cancers. Because rates of cancer in children are very low, all children’s cancers are considered rare. A quarter of all cancer deaths each year are due to rare cancers. Although new treatments are always being developed, finding new treatments for rare cancers is very hard for many reasons. The MyPART network was started to make it easier to find treatments for rare cancers.

Why are rare cancers challenging?

Rare cancers are challenging for patients, doctors, and scientists.

For patients:

  • It often takes a long time from the time you think something is wrong to the time when doctors know that you have a rare cancer and what kind of cancer it is.
  • It is hard to find doctors who know a lot about your cancer and how to treat it.
  • It is hard to know what to do when doctors don’t agree on how to treat your cancer.
  • You may need to travel far from your home and family to get treatment for your rare cancer.

For doctors:

  • You may not know what to tell your patient about what to expect with their rare cancer.
  • You may not have been trained in how to treat this type of rare cancer.
  • It is hard to find an expert in the rare cancer who can answer questions or to whom you can refer your patient.

For scientists:

  • There may be no information about the rare cancer to give you ideas on which drugs could treat it.
  • There may be no animal or cell models of the rare cancer in which to test your ideas.
  • There may not be enough tumor samples from rare cancer patients available for your research.
  • If you have an idea of a drug that could treat the cancer, it may be hard to find enough patients with the rare cancer to test your idea.
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