EPPOSI Workshop on Patients Registries for Rare Disorders - Need for data collection to increase knowledge on rare disorders and optimize disease management and care
Brussels, Belgium, Federal Public Service Employment, Labour and Social Dialogue, 18-19 March 2009
During two days, the multi-stakeholders delegation (all involved in registries’ management) hardly shared best practices but also problems they faced when setting up and managing such registries. Based on the commonalities of their experiences, they quickly agreed to close the workshop with practical recommendations for anyone funding, supporting or operating a patient registry – or considering doing so. And they did for a lot of aspects such as funding, governance, legal and ethical issues, quality of data etc…Finally, the report ends with a very useful general “Check-list for beginners”.
The Organising Committee was co-chaired by Tsveta Schyns (ENRAH), Ségolène Aymé (INSERM / Orphanet) and Elizabeth Hernberg-Stahl (SHIRE-HGT).
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Dinner Debate on the Proposal for a Directive on The protection of animals used for scientific purposes
Brussels, Belgium, European Parliament, 16 February 2009
11 MEPs and/or their assistants and EPPOSI stakeholders (Patients’
representatives, Industry representatives and Academia representatives) discussed the Proposal for a Directive on The protection of animals used for scientific purposes.
Co-Chairs: Alastair Kent (EGAN); Jean-Jacques Cassiman (ESHG); Silvia Matile-Steiner (Roche)
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EPPOSI Workshop on Chronic Conditions - A European Strategy for Chronic Conditions
Brussels, Belgium, Residence Palace - International Press Center, December 3, 2008
While a consensus on « What is a chronic conditions? » was pointed out by the delegates as the start point for the development of a European strategy in this field; they all agreed that this strategy should focus among others on promoting prevention and early diagnosis, supporting development of innovative treatments (such e-health system) as well as building awareness and fighting discrimination.
The Organising Committee was co-chaired by Rod Mitchell (EFCCA), Jean-Jacques Cassiman (ESHG) and Catherine Steele (Roche).
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