The story of
GO RARE was founded by rare disease parents who had nothing left to lose - except their children.
They found deafening silence with each life lost in the rare disease community, and a complete lack of urgency to eliminate the suffering experienced by the millions worldwide with a diagnosis. They found this both infuriating and unacceptable. Together, they vowed to be change makers who would fight for the lives of those living with rare disease- by creating one voice so loud- that we can no longer be ignored.
What's with the zebra print?
In medicine, a common phrase is “if you hear hoofbeats, think horses, not zebras”. However, in the case of rare diseases, we ARE the zebras in medicine. As a result, zebra is a universal symbol for rare diseases.
Why the umbrella?
GO RARE unites all global rare disease communities and their allies under one umbrella. Here we will weather this storm together and join forces to raise awareness and demand action to improve rare disease rights worldwide.