Governance
For the first few years the CEE GN wishes
to work closely together with scientists and industry, and all
others active in the fields of genetics, genomics and biotechnology
as far as patients' needs are focus, as the situation in many
CEE countries requires significant improvement and patient organisations
lack the support needed to be fully autonomous and effective
in their efforts due to their infancy.
Available funds at the moment are very limited
and economic situation of most of the patient representatives
is difficult. Hence, the CEE GN has set up an electronic communication
system to discuss and determine policy, priority and activities.
The membership will assemble in conjunction
with the annual meetings of the EGAN and the ESHG. The assembly
has the power and authority to govern the network.
The assembly determines the policy and decides
on the activities.
The network strives to set up, in line
with the EGAN, a network of national alliances of patient
groups involved in genetic and congenital conditions.
|
