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

1. Taking part in the online evolution Annet van Betuw Former president EuropeanChromosome 11q Network Eurordis ConferenceSatelliteWorkshop Be Connected, Be Informed Krakow 13th May 2010

2. Content presentation What are ‘social media’ What is ‘web 2.0’, ‘web 3.0’ Experiences Examples Possibilities Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 2

3. Evolution Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 3

4. Sending > Sharing Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 4

5. Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 5

6. Web 1.0 and rare disorders / diseases 1997 11q online 1997 Eurordis online Manyothernetworks: local, regional, national, international, topical, etc. Sending Some fora Yahoo groups Internet hype? Notfor rare disorders / diseases Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 6

7. Web 2.0, Social Mediasomeexamples (1) Wikipedia Jointlymakingtexts / documents Web Conferencing Moderated thematic discussing on the web during 1 or 2 weeks Via List-servers Publishafterdiscussion YouTube Many and even more Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 7

8. Social Media, someexamples (2) Flickr Skype / Telecon (teleconferencing) Blogs Ning Twitter Facebook Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 8

9. Europeanchromosome 11 network on the internet: website, facebook, mailinglist Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 9 www.chromosome11.eu

10. Unique and social mediawww.rarechromo.org >7300 members, 77 countries Hard copy magazine posted >3570 member families Electronic copyemailed to nearly3000 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 uniquevisitors website per month A lot of new families are discovering Unique firstthroughsocialnetworking sites eg Facebook Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 10

11. Social Media: LinkedIn Linkedin Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 11

12. Organisation of networks is the same Local – Regional – National –International Topical Rare disease Rare chromosomal disorders Medicaloutcomes etc Formallyorganised Informal (Not) Temporarely Ongoing Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 12

13. Content social media use Meeting, sharing Conversation More possibilities of findinginformation last 10-15 years Web 2.0: New possibilitiesforexchangingexperiencesfromdailylife! Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 13

14. Problems and chances Language Correct medical info Overload Who is to trust? Even more possibilities to meet Fastercontacts Checkingliability of contactsmucheasier Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 14

15. Future It is anevolution Join and share Addyourowntalents and support Different cultures Youth = mobile and online Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 15

16. Let usshare Taking part in the online evolution Krakow 13 th May 2010, Annet van Betuw 16 www.vanbetuwadvies.nlannet@vanbetuwadvies.nl Twitter.com/annetvanbetuwLinkedin.com/in/vanbetuwadviesFacebook.com/annet.vanbetuw