According to statistics, in order for a disease to be considered rare, less than 250,000 people must be diagnosed with it.
Doing the math, around 1 in 10 people in the United States currently have a rare syndrome that they are struggling with.
We know that the numbers aren’t strong enough on their own to hold up against a country bustling with people - but just because these conditions are rare, it does not mean that they should be forgotten or neglected, in any way. However, the common observation out there in today’s medical world is that if it doesn’t (on an average) affect a large portion of the society, it’s considered to be a phenomenon that isn’t dwelled on much.
We emphatically state that rare diseases, at the end of the day, are equally important and critical medical conditions that deserve a massive chunk of our time, help and efforts.
We strongly feel that a child with a rare syndrome shouldn’t suffer as a result of their family’s financial situation, lack of access to doctors, or being under insured.
We believe, without a doubt, we can raise awareness in the world, bring about a much-needed breakthrough and connect these children with a medical network so that they can receive the care they deserve.
We are PeaPot Jones, A Foundation for Children, and this is our story.