Costello - Morning Tutorial on Social Media - RARE CONNECT

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Denis Costello, EURORDIS, presenting on RARECONNECT, the Rare Disease / Rare Cancer Community Platform for patient organisations, at EMCC in Stockholm on 25 Sept 2011

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Costello - Morning Tutorial on Social Media - RARE CONNECT

  1. 1. Rare cancers communities participating in the rareconnect.org projectecco/esmoStockholm 2011<br />Denis Costello<br />Web Communications Officer, EURORDIS<br />
  2. 2. 2<br />www.rareconnect.org<br />
  3. 3. 12 Communities live<br />3<br />Sept 2011<br />Multiple Myeloma<br />Sept 2011<br />May 2011<br />May 2011<br />April 2011<br />April 2011<br />April 2011<br />March 2011<br />March 2011<br />Feb 2011<br />Jan 2011<br />Launched in April 2010<br />
  4. 4. Myeloma Community<br />4<br />Patient testimonials<br />User Generated Content<br />
  5. 5. Myeloma Community<br />5<br />Online discussion in several languages<br />More like a stream of conversation than a forum<br />
  6. 6. Myeloma Community<br />6<br />Breaking down the language barrier<br />On-demand human translation<br />
  7. 7. Myeloma Community<br />7<br />Social Networking functionality<br />Virtual profile<br />
  8. 8. Involvement of 64 Patient Groups from 22 countries<br />8<br /><ul><li>AIRG
  9. 9. Argenina VHL Assoc.
  10. 10. SIMBA Italy
  11. 11. Ass. Française de Behçet
  12. 12. As. Española de Behçet
  13. 13. DebRA International
  14. 14. DebRA Belgium
  15. 15. DebRA Croatia
  16. 16. DebRA UK
  17. 17. DebRA Austria
  18. 18. EB-Haus Austria
  19. 19. UK Behçet’s Syndrome Society
  20. 20. DEBRA España
  21. 21. DebRA Canada
  22. 22. Fundación DEBRA México
  23. 23. AHC Assoc. Iceland
  24. 24. A.I.S.EA
  25. 25. AESHA
  26. 26. AHC Foundation
  27. 27. L’aimAKU
  28. 28. DebRA Norway
  29. 29. DebRA Italy
  30. 30. Cystinosis Support Australia
  31. 31. CystinosisFoun. France
  32. 32. Cystinosis Support Germany
  33. 33. CystinosisFoun. Ireland
  34. 34. Mexican Cystinosis Association
  35. 35. Cystinosis Group Netherlands
  36. 36. CystinosisFoun. UK
  37. 37. CystinosisFoun. USA
  38. 38. Cystinosis Research Network
  39. 39. South Africa Support Group
  40. 40. Cystinosis Research Foundation
  41. 41. Danish HSP Assoc.
  42. 42. A.SL-HSP France
  43. 43. Spanish HSP Assoc.
  44. 44. Italian Assoc. for Living with SP
  45. 45. Holland Asoc. of Neuromusc. Disease
  46. 46. Spastic Paraplegia Foundation
  47. 47. NOMID Alliance
  48. 48. AMWS/CINCA
  49. 49. VHL Family Alliance International
  50. 50. German Assoc. for VHL Families
  51. 51. Danish Assoc. for VHL
  52. 52. Alianzaespañola de familias de VHL
  53. 53. VHL France
  54. 54. A Magyar VHL Társaság
  55. 55. Dutch VHL Organization
  56. 56. Canadian CAPS Network
  57. 57. VHL Contact Group U.K.
  58. 58. AIFP
  59. 59. Stichting FMF-Community Nederland
  60. 60. AFFMF
  61. 61. FMF Montreal
  62. 62. AKU Society UK
  63. 63. Alcaptonurie France
  64. 64. findAKUre
  65. 65. Foundation for Children with Atypical HUS</li></li></ul><li>The investment from EURORDIS<br />9<br />68 hours of webinars to NORD & EURORDIS membership (group and individual)<br />25 days of attendance at conferences<br />International AutoImmune Congress<br />Orphanet Patient Association Forum<br />European Hematology Congress<br />Visit to NORD<br />Accompaniment through involvement process<br />4 workshops (Krakow, Amsterdam x 2, Paris)<br />Presentations to Council of European Federations, ERTC, Summer School<br />
  66. 66. Funding<br />10<br />Public/Private funding model<br />Charitable organisation and Public Health funders - 2010<br />Private funders - 2010 through the EURORDIS/NORD Corporate partnership for Social Media. All private funding is fully independent (funders exercise no influence on decisions related to the platform).<br />
  67. 67. Patient Disease Management tool<br />
  68. 68. Patient reported outcomes:<br /><ul><li>Treatments
  69. 69. Side effects
  70. 70. Quality of Life</li></li></ul><li>Compare side-effects over time & against aggregated data from other patients<br />
  71. 71. Q & A<br />14<br />Thank you!<br />You can also email me:<br />denis.costello@eurordis.org<br />

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