NORD and EURORDIS: Uniting Communities through Social Media
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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
Denis Costello is a patient advocate and online communications manager at Eurordis (Rare Diseases Europe), a leading European patient-led non-profit organisation. His role at EURORDIS includes leading digital projects which enhance international collaboration amongst rare disease patient groups and raising public awareness of rare diseases. One such project is www.rarediseasecommunities.org a bespoke social network in 5 languages for patients and families living with rare diseases. Denis is also responsible for the international dimension of the online awareness campaign associated with Rare Disease Day which takes place annually on the last day of February. More information at www.rarediseaseday.org Prior career experiences include running his own technology firm and hosting a daily radio show dedicated to classical music on Irish national radio.
Tai Spargo is the Special Projects Coordinator for the National Organization for Rare Disorders (NORD). Her responsibilities include maintaining NORD’s social marketing presence, grant writing, program planning and implementation in support of the many diverse endeavors NORD fosters. Before joining NORD she worked at the U.S. Department of Transportation’s Federal Highway Administration in the Office of Transportation Policy Studies. Additionally she has been in positions at non-profits, a local Council of Governments, a Congressional Office, and a political consulting firm. She graduated from the School of Public Affairs at American University in Washington, DC with a Masters in Public Administration and a Bachelor's of Arts in Interdisciplinary Studies: Communications, Legal Institutions, Economics, and Government.