Raising a child with a rare condition can be difficult and very costly. 

The Everylife Foundation released a report in February 2021 that showed the overall economic burden of rare disease in the US is approaching ONE TRILLION DOLLARS every year. That is an attention-grabbing number. But what does it really mean? We explore this question through Raghav’s story.

Talking about finances can be uncomfortable and difficult. However, following a recent summary from their insurance company, Sanath had the opportunity to tally up the costs and he thinks it is important talk about them. It was relatively easy for him to look at the medical costs because there was a clear paper trail. He breaks down those costs and you may be surprised by what he found.

Next time, we will discuss the multiple unseen and unappreciated indirect costs that he and Ramya must bear.