Bringing together patients' perspectives on eHealth and mHealth
10 years of rare disease support – Global Genes It would be wrong to let 2018 pass without celebrating 10 years of the US-based not-for-profit, rare disease patient advocacy organisation, Global Genes. Global Genes grew out of an organisation founded in 2008 by Nicole Boice, …
When can printed resources be better than digital? In the field of cancer care and cancer care in general, in particular, patients welcome and even seek out support to manage their condition. But how should this support be delivered? In a digital world, resources to …
Patient groups unite for digital registries Digital patient registry: Patient registries have always provided an important way for patient groups to demonstrate the scale of need, support research participant recruitment, and improve treatment and overall experience. Digital technologies are making real-time evaluation of patients’ real-world experience, …
Driving patient advocacy Patient advocacy with apps: Firstly, through their use of the internet, social media and apps, there is more of a level playing field between small and larger patient groups. Secondly, for years patient organisations of all sizes have created advocacy toolkits to …