What is Rare Cancer?

Rare cancer is defined by the US government as a cancer having under 200,000 instances in the US, or greater than 200,000 instances. More than half the of people diagnosed with cancer are diagnosed with a rare type of cancer. Rare cancer diagnoses is actually common and diverse and include sarcoma, pancreatic, and lymphoma. There are 15,000 cases of sarcoma each year, which is 1% of the 1.5 million cases of cancer each year. There are only 250 cases of Ewing's Sarcoma predominantly in children up to their teenage years.

Genetics play a major role in Ewing's sarcoma. Nine out of 10 people diagnosed with Ewing's sarcoma have a genetic abnormality that makes them susceptible.

There are no screening tests to detect early signs of bone cancer, including Ewing's sarcoma. Early detection is key to surviving this aggressive type of bone cancer.

Pain is usually the most significant symptom of Ewing's sarcoma. Since many of these symptoms are commonly attributed to an injury, a muscle strain, or other illnesses or conditions, it is important that you see a doctor as soon as possible if pain persists.

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The best way to detect Ewing's Sarcoma in its earliest stage is to be mindful of its symptoms, which may include:

  • Pain at or near the site of the tumor
  • Swelling and redness near the tumor
  • Fever for no reason
  • A bone that breaks unexpectedly and without apparent reason
  • Weight loss or reduced appetite
  • Fatigue
  • A lump, if the cancer has invaded the surrounding muscle and tissue


  • One young person a day discovers that they have Ewing's Sarcoma; every year there are approximately 250 new diagnoses of young patients with Ewing's Sarcoma in the US.
  • Ewings Sarcoma is exclusively limited to Caucasians, with males being more prone to it than females. It develops between the ages of 10 & 20, making it mainly a disease affecting adolescents.
  • Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, & AIDS, combined.
  • One in every 330 Americans develops cancer before the age of 20.
  • The cancer death rate has dropped more dramatically for children that for any other age group due solely to research.