Juvenile Arthritis Association (JAA) is a 501(c)3 nonprofit organization that was formed by a small group of parents and doctors who were frustrated with the critical lack of awareness, funding and resources going to children and teens diagnosed with rheumatic diseases.
Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.
A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than type 1 (juvenile) diabetes, cystic fibrosis, and muscular dystrophy combined.
Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.
In addition to the overall lack of research, there is an equally severe shortage of specialists to treat these diseases. There are fewer than 350 board certified, practicing pediatric rheumatologists nationwide. Eight states in the U.S. have none, and fourteen more have three or fewer. Countless children are suffering the devastating consequences of inadequate access to these specialists, and many face irreversible damage caused by late diagnosis and treatment. Further, families face tremendous logistical challenges, with many traveling hundreds of miles to see a specialist.