1

Behçet’s Syndrome community on RareConnect.org

Marta Campabadal, EURORDIS RareConnect Community Coordinator

#Behcets2014

2

RareConnect in numbers

66 disease-specific communities across 5 languages

70.000 monthly unique visitors from 170 countries

2500 member visits/month

(each member spends 12 minutes/per visit on avg)

Over 1 million words human translated to date

3

RareConnect.org

Name of the meeting, Date, Place

4

Launched in May 2011www.rareconnect.org/en/community/behcet-s-syndrome

5

What’s unique about the

Behçet’s community?

#Behcets2014

6

6

1. WORKINGTOGETHER

7

RareConnect workshop Dec. 2010

Name of the meeting, Date, Place

8

Patient groups involved so far

2011: UK, Italy, France and US2012: Spain, China and Vasculitis Foundation2013: Morocco

#Behcets2014

9

2.BREAKING BORDERS

10

Machine and Human Translation. www.rareconnect.org

11

#Behcets2014

12

#Behcets2014

13

3.QUALITY

14

Behçet’s community moderators

#Behcets2014

15

4.ANALYTICS

16

1348 members

8 patient groups

36 articles

87 testimonials

421 forum topics

37.362 visitors

137 countries

Behçet’s Syndrome community on RareConnect.org

#Behcets2014

17

Members evolution:2011 – 127 members

2012 – 580 (+453) members

2013 – 997 (+417) members

2014 – 1348 (+351) members

TOTAL: 1348

Behçet’s Syndrome community on RareConnect.org

#Behcets2014

18

Where do visitors come from?

#Behcets2014

19

Where do visitors come from?*

1. United States 9,4912. Italy 5,7543. France 4,3354. United Kingdom 3,4915. Germany 1,9446. Spain 1,7287. Canada 1,3488. Algeria 7739. Switzerland 63810. Australia 634

*Figures from 2013#Behcets2014

20

Most visited pages

→FAQ’s section

→Article: Manifestations of Behçet’s Disease

→Testimonial: Il mio viaggio attraverso la malattia di Behcet

→Forum conversation: Food sensitivities with Behcets

→Behcet's syndrome community map

→Behcet's syndrome community infographic

#Behcets2014

21

Most visited pages

#Behcets2014

22

Behcet's syndrome community map

Click to see the map

+900 patients

Patient groups initiative

Completely anonymous

No personal information is shared 

23

Behcet's syndrome community map

24Polls and infographicsBetter understand patient needs

Patient groups initiative

Infographic in 6 Languages (Chinese)

Poll designed along with patient organisations

25Poster presented at the ECRD 2014 (Berlin)…

26

www.facebook.com/rareconnect

team@rareconnect.org

+34 663 092 790

@rareconnect

www.youtube.com/user/eurordis

Thanks, write me:marta.campabadal@eurordis.org

Here we are:

www www.rareconnect.org/en/community/behcet-s-syndrome

27

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

Why the Behçet’s Synd. 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