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Every month, ERN-EYE invites you to meet an active person within the network through a short interview. This month, it's Pr Elfride de Baere, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium, who accepted to answer our questions.
What is your concrete role in the ERN-EYE network?
I am the representative of the Ghent University Hospital in Belgium, the only health care provider from Belgium that has joined the ERN-EYE.
I run a diagnostic lab offering genetic testing for rare eye diseases and a research team dealing with ophthalmic genetics, which has put me into the position of joining several working groups: TWG6 and several other groups.
In your opinion, what is the most important issue ERN-EYE could overcome?
In Belgium we find ourselves in a very privileged position regarding healthcare with a very accessible system for diagnosis and care of rare eye disease.
In my opinion the most important issue would be not only to pinpoint but also to overcome differences in patient care in all EU member states connected to ERN-EYE, including underrepresented countries.
What are the main challenges of the network?
To facilitate access to diagnosis, for instance by electronic platforms developed by ERN-EYE and by improved access to genetic testing.
To realize this, mobility of expertise is important, for instance by educational programs, by developing guidelines. Also, political pressure may be needed.
And the best advances?
An ERN-EYE registry will be instrumental for the inclusion of patients in clinical trials and for patient oriented research.
This will be interesting from an epidemiological point of view but also reinforce research, as it will allow research projects stimulated by ERN-EYE. An example of this is the recently granted EJP RD project Solve-RET dealing with missing heritability in inherited retinal diseases. This is a European project I initiated together with different ERN-EYE partners.
Overall, this can lead to major scientific and medical innovations.
In your dreams, what would ERN-EYE look like in 10 years?
Sustainability of this beautiful network. Via ERN-EYE, we have created a European network of experts and of referral centers for rare eye diseases. I sincerely hope that we will maintain the network of experts, specialized clinics and patient organizations in the interest of European patients with rare eye diseases. In the long term this will be very beneficial for participation in clinical trials, for the application of therapies but also for research.