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

1. Rare cancers communities participating in the rareconnect.org projectecco/esmoStockholm 2011 Denis Costello Web Communications Officer, EURORDIS

2. 2 www.rareconnect.org

3. 12 Communities live 3 Sept 2011 Multiple Myeloma Sept 2011 May 2011 May 2011 April 2011 April 2011 April 2011 March 2011 March 2011 Feb 2011 Jan 2011 Launched in April 2010

4. Myeloma Community 4 Patient testimonials User Generated Content

5. Myeloma Community 5 Online discussion in several languages More like a stream of conversation than a forum

6. Myeloma Community 6 Breaking down the language barrier On-demand human translation

7. Myeloma Community 7 Social Networking functionality Virtual profile

9. Argenina VHL Assoc.

10. SIMBA Italy

11. Ass. Française de Behçet

12. As. Española de Behçet

13. DebRA International

14. DebRA Belgium

15. DebRA Croatia

16. DebRA UK

17. DebRA Austria

18. EB-Haus Austria

19. UK Behçet’s Syndrome Society

20. DEBRA España

21. DebRA Canada

22. Fundación DEBRA México

23. AHC Assoc. Iceland

24. A.I.S.EA

25. AESHA

26. AHC Foundation

27. L’aimAKU

28. DebRA Norway

29. DebRA Italy

30. Cystinosis Support Australia

31. CystinosisFoun. France

32. Cystinosis Support Germany

33. CystinosisFoun. Ireland

34. Mexican Cystinosis Association

35. Cystinosis Group Netherlands

36. CystinosisFoun. UK

37. CystinosisFoun. USA

38. Cystinosis Research Network

39. South Africa Support Group

40. Cystinosis Research Foundation

41. Danish HSP Assoc.

42. A.SL-HSP France

43. Spanish HSP Assoc.

44. Italian Assoc. for Living with SP

45. Holland Asoc. of Neuromusc. Disease

46. Spastic Paraplegia Foundation

47. NOMID Alliance

48. AMWS/CINCA

49. VHL Family Alliance International

50. German Assoc. for VHL Families

51. Danish Assoc. for VHL

52. Alianzaespañola de familias de VHL

53. VHL France

54. A Magyar VHL Társaság

55. Dutch VHL Organization

56. Canadian CAPS Network

57. VHL Contact Group U.K.

58. AIFP

59. Stichting FMF-Community Nederland

60. AFFMF

61. FMF Montreal

62. AKU Society UK

63. Alcaptonurie France

64. findAKUre

66. Funding 10 Public/Private funding model Charitable organisation and Public Health funders - 2010 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).

67. Patient Disease Management tool

69. Side effects

71. Q & A 14 Thank you! You can also email me: denis.costello@eurordis.org