taking part in the online evolution
DESCRIPTION
Presentation given by professional trainer of patient associations Annette Von Beutw during a satellite workshop to the 5th European Conference on Rare Diseases on May 13 2010TRANSCRIPT
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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Evolution
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Sending > Sharing
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Social Media, some examples (2)Flickr Skype / Telecon
(teleconferencing)
BlogsNingTwitterFacebook
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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European chromosome 11 network on the internet: website, facebook, mailinglist
www.chromosome11.eu
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Social Media: LinkedInLinkedin
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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!
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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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
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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FutureIt is an evolutionJoin and shareAdd your own
talents and support
Different culturesYouth = mobile
and online
Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw
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Let us share
www.vanbetuwadvies.nl [email protected]
Twitter.com/annetvanbetuw Linkedin.com/in/vanbetuwadvies Facebook.com/annet.vanbetuw