Bringing together patients' perspectives on eHealth and mHealth

Tag: rare disease

NMO Resources App – How Was It Created?

NMO Resources App – How Was It Created?

Patient charities and organisations grow and develop You don’t often find books from patient charities and organisations about how they grow and develop. Victoria Jackson co-founded the Guthy-Jackson Charitable Foundation in 2008 when her daughter was first diagnosed with Neuromyelitis Optica (NMO), a rare, life-threatening […]

Global Genes Celebrating 10 Years

Global Genes Celebrating 10 Years

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, […]