1. NORD/EURORDIS ONLINE PATIENT COMMUNITIES

2. Online Patient Communities 2 rarediseasecommunities.org

4. 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. 4

5. 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. 5

6. 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. 6

7. 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. 7

8. 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 8

9. 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 9

10. 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. 10

11. 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.

12. EURORDIS’ experience  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. 12