Justification
Those who have most to gain from the successful pursuits
of research in the field of genetics, biotechnology and health
- namely individuals and families affected by serious and
chronic debilitating and often fatal diseases - currently
lack an effective voice with which to make their views and
opinion heard by officials and politicians operating in the
European institutions.
Other voices -notably those of consumer groups, some religious
bodies, environmental and animal rights lobby groups - are
well organised and funded.
There is a crucial difference between these groups and patient
organisations.
The first groups are made up of people who voluntarily participate
in an issue, whilst patients are involuntarily participants
in that they did not choose to be affected by a life long
disease. Moreover the fact of being affected in itself reduces
their opportunities to get involved because of the physical,
psycho social and economic burden which is imposed on them.
For such patients the best hope for change will come through
scientific research into the links between genetics, biotechnology
and health and from the fast application of the results of
this research translated into diagnostics, nutri- and pharmaceuticals
as well as services to support those at risk.
Patients and patient organisations can play a pivotal role
in achieving this change by streamlining and accelerating
the R&D- process towards drug development and by functioning
as a partner of science and industry.
They can identify bottlenecks, motivate scientific groups,
deliver data, participate in trials and support networks of
excellence for their specific disease.
(see www.gig.org.uk
for various EPPOSI publications)
Reshaping the alliance
Currently the Alliance is in
the process of reshaping following the results of member meetings
in Luxembourg (2000) , Strasbourg (2002) and Birmingham (2003).
The reports of the meetings are the backbone for the new alliance
(see publications & reports).
The new Alliance will have a limited focus
and address issues in the field of genetics and biotechnology.
The 
indicate milestones of the alliance: annual meetings, workshops
and conferences organised
in conjunction with the congresses of the European Alliance
of Human Genetics
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