The Rarest Day of Them All
Rare diseases and disorders come in all shapes and forms. Some affect children, some affect patients much older. Some can be seen on the outside, some are easily recognizable from the outside. Some know the names of the disease and others are still searching. The diversity among rare diseases is extraordinarily large and the battle feels insurmountable. But it is not, if we choose not.
Rare Disease Day is about bringing awareness for rare diseases. Until a close friend of mine was diagnosed with one, I had no idea of their existence or how they impacted people. I just didn’t know. For others, their connection to rare disease is through a relative or coworker, or even a child, and some, even yourself. Until you know it, it is hard to see it. And then until you see it, it is hard to understand.
The first Rare Disease Day was celebrated in 2008 on February 29th, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
The campaign targets mostly the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. With this awareness, we hope will bring funding for research and new medications to help treat if not the disease then the symptoms. We hope that with this funding that we can have the power to influence policy makers and insurance companies so that the battle for each patient struggling to find a treatment plan doesn't then have to fight to have it paid for.
RARE. zebras and herds, we invite you to join us in this day to stand in solidarity together. Please join us on the RARE.st day, February, 28th for our Rare Disease Day event.