My Nonprofit Reviews

Global Genes is a game changer for the rare disease community. I discovered them shortly after being diagnosed with a rare disease lacking its own disease-specific non-profit and found comfort knowing there was this vibrant broader community breaking silos and transforming the patient experience. Fast forward several years to discovering that I would be my employer's point person for Global Genes as we brainstormed potential avenues for collaboration. I was star stuck by their renowned and celebrated endeavors and for good reason. As I got to know all of their employees and their immense advocacy work they raise funds to execute, it felt like meeting a celebrity you had admired who turned out to be sincere, dedicated, and deserving of your respect. As Global Genes reminds us, rare disease is not so rare but, a non-profit as collaborative and innovative as Global Genes is indeed a rare treasure.