NORD and EURORDIS: Uniting Communities through Social Media

Patients in the rare disease community often feel isolated. Support systems such as patient organizations and online communities are integral in helping to diminish those feelings.

• Discuss how rare diseases are increasingly being recognized as an international public health challenge, and the struggles and experience of patients is often similar regardless of which country they reside in.
• Understand how social media presents an opportunity for patients and their families to connect regardless of physical location and other limitations.
• Find out more about the Rare Disease Communities, a joint project of the National Organization for Rare Disorders (NORD) and the European Organization for Rare Disorders (EURORDIS) to create disease-specific online patient communities on which individuals can read information about their disease, share and read stories from other patients, find the organizations that specialize in their disease, and network with others across five different languages.
• Discover how Rare Disease Communities seeks to help patients and disease specific patient organizations connect to strengthen international collaboration and to meet the important goals of support and information sharing within a specific rare disease community.

24 international social media and patient communication experts; 15 exclusive and value adding presentations; 3 unique panel discussions; 1 unmissable online resource centre - AVAILABLE TO DOWNLOAD NOW

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Presenters:

Denis Costello
Web Communications Officer
European Organization for Rare Disorders (EURORDIS

Tai Spargo
MPA, Special Projects Coordinator
National Organization for Rare Disorders (NORD)