Rare disease research powered by empowered patients: solving the zebra puzzle through social media
Year: 2023
Type: editorial
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.
Source: Cancer
DOI: 10.1002/cncr.34765
Authors: Gilberto Morgan, Vivek Subbiah
Language: English
Subfield: Health
Field: Social Sciences
Domain: Social Sciences
Open Access status: bronze
Funders: Andrew Sabin Family Foundation, National Institutes of Health, University of Texas MD Anderson Cancer Center, Center for Clinical and Translational Sciences, University of Texas Health Science Center at Houston, National Cancer Institute, National Center for Advancing Translational Sciences, Sheikh Khalifa Bin Zayed Al Nahyan Institute for Personalized Cancer Therapy
Awards: G122915289, G1305542662, Informatics to enable routine personalized cancer therapy, Center for Clinical and Translational Sciences (CCTS), G293715275, G4587408335, G496938529, G6138997317, Blocking tumor progression in therapy-responsive RET aberration-associated cancer, G7410936242, G8993335421, Cancer Center Support Grant, Discovery of the next-generation RET-targeted drugs based on nicotinamide scaffold
OpenAlex ID: W4362505802