NORD/EURORDIS ONLINE PATIENT COMMUNITIES

Online Patient Communities2

rarediseasecommunities.org

The idea:

An online social network for patients & caregivers living with a rare disorder, to enable sharing of experiences and access to quality information across diseases and symptoms.

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What Rare Disease Communities is: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 Patient organizations work together on

this project and communicate on possible future projects.

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What Rare Disease Communities is not:A patient association website. A replacement for a patient association

website. A purely informational website on a

disease or treatment.A disease awareness website.Just another forum.

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Basic principals

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, patient organizations, NORD, and Eurordis.

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The role of the patient organization:

Improved visibility for patient organization. Display Logo & contact details Link to association’s own website

Play a role in communicating to the community. Blog entries/Updates written by patient

organization Information Research news Policy developments Events

Play a role in governance of the community. Recruiting Moderators & Volunteers

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The tools:

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

Private messaging option Ability to contact other members through the site

Testimonies Share stories in photo, video or text

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Benefits of a multi-community portal?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.

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Oversight

Monitored by patient advocates, patient organization representatives, and experts from within the specific disease community 

This format will create a trusted safe space that can facilitate community building and information-sharing. 

EURORDIS’ experience

Mailing Lists for Rare diseases Started in 2005 25 diseases in 2008 870 subscribersResearch trip to USA Meetings with leaders such as PatientsLikeMe.com,

WebMD.com, American Cancer SocietyAnnual 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.

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