1. RARE DISEASE COMMUNITIES
A EURORDIS PROJECT: TOWARD AN ONLINE PATIENT COMMUNITY
PORTAL FOR RARE DISEASES
Christel Nourissier
General Secretary, EURORDIS

2. The idea:
2
 An online social network for patients & carers living
with Rare Disease to enable sharing of
experiences and access to quality information.

3. What this is not:
3
 A patient association website.
 A purely information website on a disease or
treatment.
 A disease awareness website.
 Just another forum.

4. What this is:
4
 A Community for a group of people living with a
rare disease.
 A place to share experiences on Quality of life &
Social issues using new online tools
 Goals
 Patient 2 Patient / Care 2 Carer Practical Support
 Patient’s learn to trust their experience: Empowerment
 Participate in growing knowledge: Scientific Progress
 Sourcing better information & expertise: Literacy
 Invite consultation with external experts: Relationship
Building

5. The role of the patient
5
organisation:
 Improved visibility for patient organisation.
 Display Logo & contact details
 Link to association’s own website
 Play a role in communicating to the community.
 Dedicated blog written by patient organisation
 Information
 Research news
 Policy developments
 Events
 Play a role in governance of the community.
 Recruiting Moderators & Volunteers

6. The tools (part 1):
6
 A Community homepage
 Display latest activity in the community
 Information pages written by experts & patients
 Based on aggregate knowledge in forums & blogs
 Forums
 Classified sharing (moderated), public or private
 Mailing-List
 Private email list (moderated)
 Testimonies
 Share stories in photo, video or text

7. The tools (part 2):
7
 Social Network
 Make friends based on shared interests
 Blog
 An internet diary to document living with a disease (natural
history)
 RSS Feeds
 A “pipeline” for importing quality information
 Bookmarks
 Share your most commonly visited websites with others

8. 8
A Disease-
specific
community’s
hompage

9. 9
An example
information
page

10. 10
Forum

11. 11
A person’s
profile.
This can be
public/private or
anonymous

12. The structure
12
Portal homepage
Navigation
Communities
Tools

13. Basic principals
13
 Guaranteed by EURORDIS & NORD
 Website hosting and security
 Maintenance and long-term development
 Support staff
 Governance (linked to patient organisations and patients)
 Each community built in consultation with patients
 Pilot phase with 4 disease communities: launch Nov 09
 Financed by European Commission, the French Telethon
(AFM) and the French Federation of Pharmaceuticals
(LEEM).

14. Benefits of a multi-community portal?
14
 Patients are already sharing online via Facebook etc.
Limited in its potential for the advancement of
knowledge.
 Moderators will read all exchanges and write synthesis articles
 A portal guaranteed by EURORDIS & NORD protects
the voice of patients from purely commercial interests.
 Negotiate the best kind of partnerships with research,
technology partners etc to effect maximum benefit for
greatest number of patients.
 Stop re-inventing the wheel. Concentrate efforts.

15. EURORDIS’ experience
15
 Mailing Lists for Rare diseases
 Started in 2005
 25 diseases in 2008
 870 subscribers
 Research trip to USA
 Meetings with leaders such as PatientsLikeMe.com, WebMD.com,
American Cancer Society
 Annual EURORDIS Conference – May 2009
 Invited participation of successful models: duchenneconnect.org
 Partnership with data-mining technology: bridge with research
 Lessons Learned
 Each community is different, therefore demands individual treatment
when building an online community.
 EURORDIS Charter of Good Practice in Online Community governance.

16. Soliciting patient participation
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 Communication Based Assessment
 Interviews with patients to determine where patients already
source their information (what websites, Journals etc..)
 What are the subjects & themes that the community needs to talk
about i.e. a kind of table of contents?
 What design, look-feel, colors would promote adoption &
adhesion?
 Recruitment and follow-up support
 Recruitment and training of a team of patient or carer volunteers
 Administrator
 Information manager
 Host(s)
 Moderators x 3 or4 (forums mailing-lists)

17. Participation of patients II
17
 Test the community
 Making sure it lives up to expectation before releasing
to all patients
 Launch (Nov. 2009)
 PHASE 1: Create start-up content to launch discussions
 PHASE 2: Communicate to larger community of patients
to promote participation.