GO RARE seeks to dissolve the boundary between rare and common.
Mission >>>
Our Core Values
One Loud Voice
Through advocacy with one united voice, we will achieve the change we seek for the rare disease community. Our noise must be a steady beating drum and loud enough to garner the attention it deserves. At GO RARE, we acknowledge and celebrate that there are more ways to have our voice heard than through words. We uplift our non-verbal community.
Take Back our Table
Currently, almost every decision related to rare disease care relies on the opinions and approval of unaffected individuals in positions of “power”. This must change. Rare disease patients and families should be at the head of the table and have input on every decision affecting their health, not begging for what they need.
Finding the Common in Rare
Not only is rare disease more common than most people think, the people and families affected by rare disease are not so different from the rest of the population. By finding the similarities between rare and our allies, we can work together to cut through the red tape.
Join the Herd
No effort is too small in spreading the word. Whether you have only 5 minutes to share our message on social media, are able to occasionally volunteer your time and talents, or can even ask a friend to join the fight; every action counts.
Health Equity for All
Over 95% of 10,000 rare diseases do not have approved treatments. This results in significant health disparity issues. People and families affected by rare disease want to be defined by their strength, not by their struggle. Unfortunately, the current landscape makes every single step a constant battle, and it shouldn’t be that way.