Thus far, the patients the people for whom these matters hold most importance have not been involved. This means that a number of decisions have already been taken by researchers and policy-makers across Europe, without any real knowledge of the views of the very large section of the public that would be most affected by potential stem cell therapies.

To emphasise the inequity of this position, it has become clear that not only is the public insufficiently informed about stem cell research, but many policy-makers also fail to understand the science and the actual positions of ethicists and religious leaders. A matter of even greater concern is the fact that politicians at the national and European levels are also badly informed about the views of their constituents (the patients). During the political discussions that will take place in the years ahead, politicians and their civil servants will need accurate information so that appropriate policies can be tabled and debated to produce decisions that will really benefit European citizens.

The European Commission
This situation prompted the European Commission (EC) Directorate-General for Research to open a call for a Special Support Action in its 6th Framework Programme to organise a one-day conference by patients for patients to allow debate on the issues surrounding European stem cell research. The concept was to bring together representatives of all stakeholders, including a majority of patients, to allow all views to be discussed and, especially, for the patients views to be heard. The European Federation of Neurological Associations (EFNA) was awarded a grant of ¬ 500,000 to help bring this concept to life. Further fundraising proved necessary and EFNA rose successfully to this additional challenge.

EFNA
EFNA is a union of pan-European federations of national patient advocacy organisations in the field of neurology. Its members, in terms of numbers of patients, range from the very large to the very small. The European Parkinson s Disease Association (EPDA), the European Multiple Sclerosis Platform (EMSP), Alzheimer Europe, the Stroke Association for Europe (SAFE) and others at one end of the scale work in partnership with much smaller groups, such as European Dystonia Federation (EDF), Euro-Ataxia, European Network for Research into Alternating Hemiplegia (ENRAH) and Retina Europe, at the other end. The aim of EFNA is to contribute to the advancement of neurology and related areas to improve the quality of life of people living with neurological conditions by working with medical and other associations in a Partnership for Progress . Bringing together the energies of many groups on a clearly understood area of medicine such as neurology can often be a more effective way of making the patient s voice heard. The Partnership approach lends itself well to organising a wide-ranging conference involving a large number of different stakeholders.

Debate and Policy
The Brussels conference was one with a difference. There was no podium and no long presentations of complicated scientific or ethical topics with a lack of real oppor-tunity for the audience to question and debate points with the speakers and other audience members, nor were there any break-out sessions for parallel discussions on separate topics. Previous meetings on stem cell research have mainly been organised by scientists for scientists or among ethicists but on this occasion, all stakeholders were given the opportunity to take part fully in a moderated and serious debate.

The meeting was organised as a televised debate, and pre-recorded videos of the views of various experts plus footage of actual research work were shown. Throughout the conference, there were live interviews with the speakers (who made short statements rather than presentations) by an experienced moderator a well-known UK television newsreader who walked among the audience, inviting them to question and interact with the experts. The aim was to give accurate scientific information about stem cells, alongside the views of representatives from politics, religion, ethics, media, etc., and then find out what European patients actually think about this important area of research. Simultaneous translation was provided in seven languages. Voting keypads were also used,to allow the anonymous opinions of the audience to be canvassed on the most important topics emerging from the discussion and to measure any overall changes of view as the debate progressed.