Interview of Christina Fasser, ePAG representative and President of Retina International

My name is Christina Fasser,
I’m the president of Retina International -What is your concrete role in
the ERN-EYE Network? – I’m a so called ePAG that means a patient advocate within the
network. Our role is to make sure that the questions and the things are patient
centered that when we see that something is too far away for the patient or
unrealistic that we come into you and intervene and give advice. -In your
opinion what is the most important issue ERN-EYE could overcome? The most
important objectives of the ERN-EYE is to have health provider, health centers
that are knowledgeable, that are able to diagnose and wherever to treat rare eye
diseases to reduce the patient journey. That means that it doesn’t need many
years to get to the diagnosis, to get it quickly and to get it to the best of the
state of art, to make sure that there is also genetic diagnosis included and
genetic counseling. – What are the main challenges of the network? -The main
challenge is that first, the network grows together and can reach out to the
patients, the HCP’s need to be included in
the ERN and that it is clear that the ERN is part of their day-to-day
work and so that comes to the final real challenge of the ERN-EYE that at the
moment it depends very much on the volunteer ideas of the HCP’s to
participate and to help to let it happen and for this we have to make sure that
these ERNs will be sustainable and we last longer than the initial five
years they have been grounded minimal support and we do hope that we get more
grants issued which are dedicated to the rare eye diseases and especially to the
ERNs -What are the best advances? -I think one of the best
advances very quickly is that the community of ophthalmologists and
scientists and geneticists in the rare eye disease area in Europe worked
together and started to work on projects also outside of the ERN and it now build
up a community and on the other hand I think that it’s CPMs, the virtual clinic
where you can put up critical cases and then a panel of specialists throughout
Europe will discuss it, I think that’s for the patient a very important step
forward – To conclude, in your dreams what would ERN-EYE look like in
ten years? -In ten years, the ERN-EYE should be covering whole
Europe also those countries where at the moment there is no member of the
ERN-EYE and that the ERN-EYE has the means to continue to work and of
course I hope that for many more diseases in ten years there will be
treatments available and accessible to all European citizens -Thank you very
much Christina – You’re welcome.

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