Rare disease research powered by empowered patients: solving the zebra puzzle through social media

Abstract

Plain Language Summary Social media platforms like Facebook and Twitter have revolutionized rare disease research and have catalyzed the connection among patients with rare cancers. A new study from the Germ Cell Tumor Survivor Sisters Facebook group provides evidence of the utility of naturally forming patient groups assisting researchers with developing the evidence base for care and supporting those living with the disease. Such studies are the first steps in rare disease research powered by empowered patients by solving the zebra rare disease puzzle through social media.