What is Rare Disease Day?
Rare Disease Day occurs on the last day of February and was created to raise awareness about the 7,000 known rare diseases, many of which have no treatment. Although each rare disease affects fewer than 200,000 Americans in total, these diseases affect an estimated 30 million people in the United States. In other words, one in ten Americans are suffering from rare diseases, and more than half of them are children.
Besides dealing with their specific medical problems, people with rare diseases struggle to receive a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
Cancer in children is a rare disease. Parents of approximately 16,000 children in the United States this year will hear the horrific news that their child has cancer. Sadly, 1,190 children (aged 0 -14) and 540 adolescents (aged 15-19) are expected to die from cancer in the US during 2021.
Childhood cancer is not one disease - there are more than 12 major types of pediatric cancers and over 100 subtypes.
About 400 to 500 new cases of rhabdomyosarcoma (RMS) occur each year in the United States. Zach (right) was diagnosed with Stage 4, High Risk Embryonal Rhabdomyosarcoma in 2009.
His mom Jennifer says, “…Zach was not sleeping or eating well. This went on for a few days before several people noticed his stomach was kind of bulging out more than usual.”
After tests and x-rays, the doctors discovered a six-inch tumor in Zack's stomach area that was cancerous. He was signed up for a clinical trial and received 45 weeks of chemo and 6 weeks of radiation.
Zach has been cancer-free since May 2011!
