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Taking part in the online evolution
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Taking part in the online evolution
Annet van Betuw Former president European Chromosome 11q Network
Eurordis ConferenceSatellite Workshop Be Connected, Be Informed
Krakow 13th May 2010
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Content presentationWhat are ‘social media’What is ‘web 2.0’, ‘web 3.0’Experiences Examples Possibilities
Taking part in the online evolutionKrakow 13 th May 2010, Annet van Betuw
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Evolution
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Sending > Sharing
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Web 1.0 and rare disorders / diseases1997 11q online1997 Eurordis
onlineMany other
networks: local, regional, national, international, topical, etc.
Sending Some foraYahoo groupsInternet hype?
Not for rare disorders / diseases
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Web 2.0, Social Mediasome examples (1)
Wikipedia ◦ Jointly making
texts / documentsWeb
Conferencing◦ Moderated
thematic discussing on the web during 1 or 2 weeks
◦ Via List-servers◦ Publish after
discussion
YouTube◦ Many and even
more
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Social Media, some examples (2)Flickr Skype / Telecon
(teleconferencing)
BlogsNingTwitterFacebook
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European chromosome 11 network on the internet: website, facebook, mailinglist
www.chromosome11.eu
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Unique and social mediawww.rarechromo.org
>7300 members, 77 countries
Hard copy magazine posted >3570 member families
Electronic copy emailed to nearly 3000
Discussion forum website 2500 members
3658 fans on Facebook, 50 new fans per week
1200 – 1500 visitors to Facebook page each week
130 followers on Twitter >9000 unique visitors
website per month
A lot of new families are discovering Unique first through social networking sites eg Facebook
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Social Media: LinkedInLinkedin
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Organisation of networks is the same
Local – Regional – National –International
Topical◦ Rare disease◦ Rare
chromosomal disorders
◦ Medical outcomes◦ etc
Formally organised
Informal(Not)
TemporarelyOngoing
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Content social media useMeeting, sharingConversation More possibilities
of finding information last 10-15 years
Web 2.0: New possibilities for exchanging experiences from daily life!
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Problems and chances
Language Correct medical
infoOverloadWho is to trust?
Even more possibilities to meet
Faster contactsChecking liability
of contacts much easier
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FutureIt is an evolutionJoin and shareAdd your own
talents and support
Different culturesYouth = mobile
and online
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Let us share
www.vanbetuwadvies.nl [email protected]
Twitter.com/annetvanbetuw Linkedin.com/in/vanbetuwadvies Facebook.com/annet.vanbetuw