Why Does Rare Disease Research Matter?
There are over 8,000 known rare diseases and many more unidentified diseases that await clinical research. This is partly due to statistics which claim the rarer a disease is, the less likely it is to be successful at acquiring the necessary research funding to look for a cure or new treatments. Preference is given to common ailments such as cancer or diabetes with a large patient population compared to the rare disease audience.
The average length of time, from onset of symptoms to an accurate diagnosis is 5 years which sadly means that 30% of children with a rare disease will not celebrate their 5th birthday.
The time is now to invest in rare disease research.