EuroGentest coordinator and president elect of the EHSG, Professor Jean-Jacques Cassiman is to use this year's ESHG conference in Barcelona as a plarform to illustrate the achievements of the Network of Excellence (NoE) format.
Speaking on the eve of a conference which will see a record number of achievements presented by the EU-funded five-year project, Cassiman and his expert steering committee stressed their belief that genetic patients across the EU and associated states are already experiencing real and lasting benefits.
According to Professor Cassiman: "1 in 17 of us will suffer from a genetic disease. With the cost of diagnosis and treatment growing rapidly, genetic testing urgently needs to be harmonised across the EU. We in the genetics community - from geneticists to patient groups - realise this need and are united in the belief that Network of Excellence is the ideal vehicle to tackle the situation. Already through the unstinting efforts of our working parties and collaborators we have made major advances in our goal. Advances that are bringing immediate benefits to patients.
"For example we have just launched in conjunction with Orpha.net a database where patients and their families across Europe can now check out on-line the credentials of laboratories offering genetic tests. This is we believe essential since many of the diseases are extremely rare, specialist testing laboratories are often not local and may even be in different countries. In addition, Genetic testing often results in considerable stress to patients and their families and so we have also produced a series of freely available patient information leaflets. Covering the main genetic disorders and the issues involved, they have been in great demand and been translated into nearly all community languages."