What is Rare?Think Zebras not Horses
What is a Rare Disease?
Within the United States a rare disease is considered to be something that less than 200,000 people have within the states. Within Europe, a disease is considered to be rare if it affects 1 in 2000 people or less. The means that sometimes diseases can affect only a small handful of people or more than 200,000 and still be considered rare.
Children are affected by 50% of rare diseases.
30% of those children don’t make it to their 5th birthday.
It is believed that 80% of rare diseases are genetic in origin.
“Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease,” from Rare Disease Day
This presents problems in the diagnostic process as many diseases can look like one thing and turn out to be something completely different. It is frustrating for both patient and medical professional alike.
The other big hurdle that patients face is the lack of training and information available to doctors in general causes it to be hard to find a medical provider that is knowledgeable about that specific disease. Often patients have to travel long distances to see a provider that has some experience with their condition, let alone see someone who specializes in it.
And Donate to research and organizations that are working toward finding cures and/or supporting individuals and families who are suffering from these diseases.
It can be a very lonely road when you have a Rare disease. But with your help, Rare doesn’t have to mean Unheard anymore!