RARE DISEASE COMMUNITIES
A EURORDIS PROJECT: TOWARD AN ONLINE PATIENT COMMUNITY
PORTAL FOR RARE DISEASES
General Secretary, EURORDIS
An online social network for patients & carers living
with Rare Disease to enable sharing of
experiences and access to quality information.
What this is not:
A patient association website.
A purely information website on a disease or
A disease awareness website.
Just another forum.
What this is:
A Community for a group of people living with a
A place to share experiences on Quality of life &
Social issues using new online tools
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
The role of the patient
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
Play a role in governance of the community.
Recruiting Moderators & Volunteers
The tools (part 1):
A Community homepage
Display latest activity in the community
Information pages written by experts & patients
Based on aggregate knowledge in forums & blogs
Classified sharing (moderated), public or private
Private email list (moderated)
Share stories in photo, video or text
The tools (part 2):
Make friends based on shared interests
An internet diary to document living with a disease (natural
A “pipeline” for importing quality information
Share your most commonly visited websites with others
This can be
Guaranteed by EURORDIS & NORD
Website hosting and security
Maintenance and long-term development
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
Benefits of a multi-community portal?
Patients are already sharing online via Facebook etc.
Limited in its potential for the advancement of
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.
Mailing Lists for Rare diseases
Started in 2005
25 diseases in 2008
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
Each community is different, therefore demands individual treatment
when building an online community.
EURORDIS Charter of Good Practice in Online Community governance.
Soliciting patient participation
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 &
Recruitment and follow-up support
Recruitment and training of a team of patient or carer volunteers
Moderators x 3 or4 (forums mailing-lists)
Participation of patients II
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.