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Taking part in the online evolution

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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 2010

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Taking part in the online evolution

  1. 1. Taking part in the online evolution<br />Annet van Betuw <br />Former president EuropeanChromosome 11q Network<br />Eurordis ConferenceSatelliteWorkshop Be Connected, Be Informed<br />Krakow 13th May 2010<br />
  2. 2. Content presentation<br />What are ‘social media’<br />What is ‘web 2.0’, ‘web 3.0’<br />Experiences<br />Examples<br />Possibilities<br />Taking part in the online evolution<br />Krakow 13 th May 2010, Annet van Betuw<br />2<br />
  3. 3. Evolution<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />3<br />
  4. 4. Sending > Sharing<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />4<br />
  5. 5. Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />5<br />
  6. 6. Web 1.0 and rare disorders / diseases<br />1997 11q online<br />1997 Eurordis online<br />Manyothernetworks: local, regional, national, international, topical, etc.<br />Sending<br />Some fora<br />Yahoo groups<br />Internet hype? Notfor rare disorders / diseases<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />6<br />
  7. 7. Web 2.0, Social Mediasomeexamples (1)<br />Wikipedia<br />Jointlymakingtexts / documents<br />Web Conferencing<br />Moderated thematic discussing on the web during 1 or 2 weeks<br />Via List-servers<br />Publishafterdiscussion<br />YouTube<br />Many and even more<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />7<br />
  8. 8. Social Media, someexamples (2)<br />Flickr<br />Skype / Telecon (teleconferencing)<br />Blogs<br />Ning<br />Twitter<br />Facebook<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />8<br />
  9. 9. Europeanchromosome 11 network on the internet: website, facebook, mailinglist<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />9<br />www.chromosome11.eu<br />
  10. 10. Unique and social mediawww.rarechromo.org<br />>7300 members, 77 countries<br />Hard copy magazine posted >3570 member families<br />Electronic copyemailed to nearly3000<br />Discussion forum website 2500 members<br />3658 fans on Facebook, 50 new fans per week<br />1200 – 1500 visitors to Facebook page each week<br />130 followers on Twitter<br />>9000 uniquevisitors website per month<br />A lot of new families are discovering Unique firstthroughsocialnetworking sites eg Facebook<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />10<br />
  11. 11. Social Media: LinkedIn<br />Linkedin<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />11<br />
  12. 12. Organisation of networks is the same<br />Local – Regional – National –International<br />Topical<br />Rare disease<br />Rare chromosomal disorders<br />Medicaloutcomes<br />etc<br />Formallyorganised<br />Informal<br />(Not) Temporarely<br />Ongoing<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />12<br />
  13. 13. Content social media use<br />Meeting, sharing<br />Conversation<br />More possibilities of findinginformation last 10-15 years<br />Web 2.0: New possibilitiesforexchangingexperiencesfromdailylife!<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />13<br />
  14. 14. Problems and chances<br />Language<br />Correct medical info<br />Overload<br />Who is to trust?<br />Even more possibilities to meet<br />Fastercontacts<br />Checkingliability of contactsmucheasier<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />14<br />
  15. 15. Future<br />It is anevolution<br />Join and share<br />Addyourowntalents and support<br />Different cultures<br />Youth = mobile and online<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />15<br />
  16. 16. Let usshare<br />Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw<br />16<br />www.vanbetuwadvies.nlannet@vanbetuwadvies.nl<br />Twitter.com/annetvanbetuwLinkedin.com/in/vanbetuwadviesFacebook.com/annet.vanbetuw<br />

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