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

Meeting the needs of people and families with rare diseases has been neglected by health care providers and industry for too long for many reasons. But this issue is making its way up the agenda. Governments are beginning to recognise the importance of providing incentives. Industry is making use of the pathway from high quality basic science to innovative therapies for patients who need them. This is important for families affected by rare diseases now, and also as a pointer to future treatments for more common disorders as they may benefit from increased knowledge gathered by rare disease research. Furthermore, access to beneficial innovation, once available, is a further issue of high importance. And at the origin of every good treatment lies a timely and accurate diagnosis.

This high level workshop will bring together representatives from key stakeholder groups – patients, regulators, charities, the academic and clinical community, industry and health care providers – from across Europe and North America and from the rest of the world. The workshop will discuss the issues on the basis of a comparison of best practices and real examples, promote international exchange of information, and look at stumbling blocks and emerging issues. It will also conclude with suggested actions for all stakeholders

A number of top people involved in the field have already committed their active participation, and others are being solicited today (see attached draft programme).

The event is sponsored by the UK’s Department of Health and Department of Trade and Industry, and by NIH and supported by the EMEA and the FDA. You’ll find a pre-conference paper attached for further information about EPPOSI and the goal of the workshop.

Places are limited and are filled on a first come first serve basis.
For sponsorship, please contact Jon Faragher at jon@ebe-biopharma.org.

The Co-chairs:

Workshop’s current sponsors:

EPPOSI wishes to thank following companies/organisations for their contribution and support :