Update on the Mysasthenia Gravis community on RareConnect.org

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After being launched for 1 year, the RareConnect team updates the EuMGa, the European Myasthenia Gravis Federation on progress made in the MG community.

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Update on the Mysasthenia Gravis community on RareConnect.org

  1. 1. Rob Pleticha, Online Communities Manager, EURORDIS International MG Community
  2. 2. EURORDIS is a non-governmental patient- driven alliance of patient organisations representing 571 rare disease patient organisations in 52 countries.
  3. 3. RareConnect project RareConnect.org is an online social network for patients and families. Communities are built in partnership with patient groups who help create, moderate, and maintain. Each community is in 5 languages with human translation. There are 54 rare diseases currently listed on RareConnect, including porphyria.
  4. 4. MG community on RareConnect Patient-centered community that promotes global conversation and connections between patients, families and caregivers to improve the lives of people living with rare diseases.
  5. 5. Project Aims • facilitate patient and carer peer support • empower patients and carers to trust their experience • promote progress in research through patient generated knowledge • build relationships by inviting intervention from medical professionals
  6. 6. MG Community • Launched June 2013 in 5 languages – FR, EN, DE, IT, ES • Seeded with stories, videos, articles… • Human translation of all future stories automatically • On demand human translation and Google Translator for forum posts
  7. 7. MG Community • Many topics set for discussion, few responses. • 145 registered members who have written 7 testimonials. • 3 articles and 31 forum topics. Let’s go over some statistics from the MG community…
  8. 8. Partners and Patient groups involved
  9. 9. The MG community in numbers 5,608 total unique visitors (since June 19th)
  10. 10. Where do the members come from? 1. Unknown 38 2. Italy 27 3. United States 16 4. United Kingsom 9 5. Spain 9 6. Romania 8 7. France 9 8. Ireland 3 9. Martinique 2 10. Switzerland 2 11. Perú 2 12. Hungary 1 13. Netherlands 1 Total of Members: 145
  11. 11. Where do visitors come from? 1. Italy 1,112 2. United States 916 3. France 692 4. Germany 325 5. Spain 316 6. United Kingdom 316 7. Mexico 297 9. Romania 202 10. Canada 126 11. Belgium 118 12. Hungary 106 13. Peru 81 Total of countries: 89 Total of visitors: 5,608
  12. 12. How do visitors find the community? –Google  3,046 –Direct traffic  812 –Facebook  806 –Mobile Facebook  375 –Eurordis.org 118 –Miastenie.ro 90 –Twitter 73
  13. 13. Which search terms are used? – myasthenia gravis – miastenia gravis – myasthenia gravis association – myasthénie forum – myasthenie medicaments interdits – miastenia – alimentazione miastenia gravis – liste medicaments interdit myasthenie – miastenia gravis forum – myasthenia gravis uk - myasthenia gravis video - myasthénie grave - sport e miastenia - www.mga-charity.org - accociation de myasthénie grav
  14. 14. Which topics are being discussed?
  15. 15. Why the MG community on RareConnect? • Patient data is not sold • Patient groups govern the community and drive where the project goes • Human translation of stories and forum posts across 5 languages on key issues like accessing treatments • Help us create an international space for supporting patients and their families
  16. 16. Privacy on RareConnect • You can decide if you want a public or private profile. • Check a box and your message will only be viewable for registered members. • Use a nickname. • The RareConnect team keeps an eye on all the community members to ensure they belong there.
  17. 17. If a patient group wants to be involved on the MG Community • Join: http://www.rareconnect.org/en/register • Encourage your members to join the international conversation enabled by human translation • Share the link to the Community on your website, social media, newsletter • Place badge on your website/blog or add RSS feed to your website • Post updates on your group’s activities, share an update to your family’s journey
  18. 18. How can we grow and engage members? What new content can be added?
  19. 19. Keeping communities active • Organise a webinar with a specialist or researcher • Ask a healthcare professional to write about their work • Create a short video interview • Share photos from your recent event • Share your story as a patient or a caregiver
  20. 20. Trimethylaminuria (TMAU) Webinars • 5 webinars with prominent specialists • Over 140 attendees • Webinars are recorded • Researchers answer patient questions after the presentation • Patients use webinar as gathering place to share experience via chat
  21. 21. Involvement of medical experts
  22. 22. Involvement of medical experts
  23. 23. Community poll & Infographic - Translated into 5 languages - Designed by patient groups
  24. 24. Community poll & Infographic - Visual and attractive - Perfect for Social Media - Available in 6 languages (including chinese)
  25. 25. Alkaptonuria (AKU) clinical trials
  26. 26. Video Interviews
  27. 27. Patient organisations activites
  28. 28. RareConnect vs. Facebook Here are a few differences between RareConnect and Facebook: - Facebook has advertising and sells your information to marketers. - RareConnect does not have advertising and does not share information with ANY 3rd parties. - RareConnect has human translation across 5 languages. - Facebook uses machine translation. -Facebook may delete old posts in Groups, without warning or explanation, old messages disappear. - RareConnect keeps all messages and stories in the same place, with permanent links. - Facebook isn't that concerned with rare diseases. - RareConnect staff at EURORDIS and NORD want to assist patient groups in using RareConnect to build an international diseases movement.
  29. 29. www.facebook.com/rareconnect robert.pleticha@eurordis.org marta.campabadal@eurordis.org +34 663 092 790 @rareconnect www.youtube.com/user/eurordis Thanks, let us know how we can work together More information:

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