Web 2.0 and rare diseases

Learn how social networks have changed the lives of people living with a rare disease

In the early 2000s, new technologies and tools, like blogs, wikis, RSS, allowing more interactivity, information sharing, user participation, became popular on the Internet. In this video tutorial EURORDIS volunteer David Oziel will talk about common social networks such as Facebook but also specific rare disease social networks such as RareConnect

DOWNLOAD the slides used in this presentation. (DOWNLOAD the transcript)

Page created: 17/05/2013
Page last updated: 10/04/2018
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases