AGORA | The 5th Annual International Experience Exchange for Patients organizations
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The 5th Annual International Experience Exchange for Patients organizations

The 5th Annual International Experience Exchange for Patients organizations

The IEEPO was held for the fifth year in Zurich Switzerland on the 5-6 March 2013 by ROCHE. The Chair of AGORA was invited as a speaker and asked to present the rationale and the challenges faced by the Southern European countries as well as the process followed that led to the forming of this new platform organization.

Representatives from about twenty five countries worldwide were invited to attend. Five therapy areas were covered namely, Rheumatoid arthritis and inflammation, CNS and neurology, Cancer and Haematology, Hepatitis, and other (Renal disease/Nephrology, Transplants, Cystic Fibrosis, Clinical Research).

On day 1, module 1 referred to the role of policy makers in access to health care and there were presentations on how a patient organization can influence access to treatment (Argentina) and a presentation on the experience from Japan.

Module 2 in the afternoon concerned experience exchange and there were presentations on the topic of alliances to advance the patient agenda (Denmark) on the setting up of regional umbrella (AGORA), on how to build an alliance campaign (Italy) and on how patients and families could be supported (Spain). A discussion followed.

After the brake, there was a keynote speech of a lived experience (USA) on the building of an effective advocacy programme.

On day 2, time was allowed for participants to pose questions to Roche Chief Executive Officer Mr. Severin Schawn . After the group photo there was a panel discussion on patient groups and clinical research.

The afternoon session was about stigma and illness and the presentations were focused on Hepatitis (Germany), Cancer (Italy), Rheumatoid Arthritis (Denmark) and mental illness (Lithuania) . Discussion with all speakers followed.

Before closing the meeting the Chair Mrs Mary baker made a summary of the event.

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