SIXTH WORKSHOP ON PARTNERING FOR RARE DISEASE THERAPY DEVELOPMENT
London, 25-27 October 2005
“People with Rare Diseases – No Longer Alone in the World”

Encouraging research, facilitating development, and securing take up of innovation and treatments for rare diseases through a supportive regulatory framework and functional partnering to ensure equal access to treatments for all.

About EPPOSI

The European Platform for Patients’ Organisations, Science and Industry (EPPOSI) is an EU patient-led partnership between patient organisations, industry and academic science and clinicians, founded in 1994 to discuss and influence policies in human healthcare in Europe based on joint views by its stakeholders.

EPPOSI is officially registered as a not-for-profit International Society under Belgian law. It is managed by a Board of Directors, consisting of EPPOSI members representing patient organisations, academia and industry. The Chair is always a patient representative.

EPPOSI’s mission is achieved through a range of activities including meetings, debates and workshops between stakeholder representatives. For the past five years, EPPOSI has organised an annual therapy development & partnering workshop in European capital cities: in Brussels in 2000, Paris in 2001, Rome in 2002, The Hague in 2003 and Berlin in 2004. This year EPPOSI is organising the 6th version of this workshop in the form of an international workshop to be held in London during the UK EU presidency, with the support of the UK department of Health and department of Trade & Industry, and also with support by the National Institutes of Health (NIH) and the Food & Drug Administration’s (FDA) Office for Rare diseases, in collaboration with the EMEA and OrphanPlatform.

The aim of this EPPOSI event is to provide a forum for discussion between political decision makers, healthcare providers, patient representatives and industry from several regions of the world, on the research and development of innovative health products and health services and their impact on the quality of life of patients, with a focus on rare diseases. They seek to open up the debate in order to evaluate, if and how, specific conclusions and recommendations can be reached, whether a basis for consensus is achievable and, if so, what this consensus will be.