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Interview of the month - Dr Laura Mauring
Every month, ERN-EYE invites you to meet an active person within the network through a short interview. This month, it's Dr Laura Mauring from the Tartu University Hospital in Estonia.
"The best advantages of the network are the infrastructure provided by the network that means that more experienced colleagues spread their knowledge to their counterparts in countries of smaller populations, where you see less people with Rare Eye Diseases. And for the patients, I think the best advantage is to know that they really get the best expertise in their own respective countries."
Hi, I'm Laura Mauring, I am one of the representatives of Tartu University Hospital in Estonia, which is a new full member of the ERN-EYE Network and in Estonia I'm an ophthalmologist and resident in medical genetics. In the ERN-EYE, I'm mostly active in pediatric working group but I also try to be active in transversal working group number six which is the one that deals with the genetic diagnosis.
In your opinion, what is the most important issue ERN-EYE could overcome?
I think the most important issue that the ERN-EYE should overcome is the inequality between patients with Rare Eye Diseases and more common diseases. This inequality can be encoded for example in time to diagnosis also in time to recognition of disability and of course for treatment which is, as we all know, not very available for rare diseases. So I think the patients with rare diseases should get equal care with the ones that present, with more common diseases.
What are the main challenges of the network?
The main challenges of the network is the spread of the knowledge about Rare Eye Diseases in general public and among politicians and of course physicians who don't encounter rare disease patients on daily basis. I think this is where the consensus documents and recommendations come in handy because this actually helps with the management of rare disease patients. If something is put down in black and white as for recommendations it will be followed.
And the best advances?
The best advantages of the network are the infrastructure provided by the network that means that more experienced colleagues spread their knowledge to their counterparts in countries of smaller populations where you see less people with Rare Eye Diseases. And for the patients, I think the best advantage is to know that they really get the best expertise in their own respective countries. That means that if we ask from the ERN-EYE experts it's not one clinician we are asking the advice of but it is actually a consensus of different experts and that really means for the patient that they don't need to go looking for different opinions or second opinion but they really get the highest level of advice from their respective countries.
In your dreams, what would ERN-EYE look like in 10 years?
In 10 years, I hope that we are still as united as we are today and that the people's motivation is still as high as it is today. I'm sure that the feeling of this being one team and being a team member is really the hard work of ERN-EYE team under the leadership of Hélène Dollfus. I think if we will continue working like this for 10 years, we will achieve our goals that means Rare Eye Disease registry, the guidelines and we'll just need to keep up the good work.
This ERN is supported by:
