How to use the speech recognition tool?
Every month, ERN-EYE invites you to meet an active person within the network through a short interview. This month, it's Dr Sandra Valeina, from the Children’s Clinical University Hospital in Latvia, who accepted to answer our questions.
I am Sandra Valeina, a member of ERN-EYE, a representative of the Children’s Clinical University Hospital in Latvia. I am a pediatric ophthalmologist and the head of Children’s Eye Diseases clinic. I participate in working group three( WG3), which is responsible for rare pediatric ophthalmology diseases and in transversal groups, dealing with low vision, patient groups (TWG 5) and education, training and guide lines (TW 9).
In your opinion, what is the most important issue ERN-EYE could overcome?
I would say, the rich diversity of European countries. On the one hand this diversity must be preserved, however, on the other hand, it must be levelled off as much as possible. Among us there are countries where the issue of rare eye diseases has been addressed and examined for over many years. Among us there are countries where the issue of rare eye diseases only now is being considered. Among us there are countries with decent, adequate budgets for Health Care as well as countries with limited, tight budgets.
In order to unite such relatively diverse and different things, the ego of each individual and the ego of each country have to be put aside. Inclusion is crucial. It is vital to cooperate including, involving everything and everybody. That might be the way to overcome the obstacles caused by diversity and existing differences.
It is very important to recognize and accept each countrie’ s existing opportunities, realities and challenges. It is equally important that each individual country recognizes and takes up the existing opportunities of the European Reference Networks. That’s a pity when Europe’s good ideas are not heard. Therefore opportunities are sometimes missed. However, we can’t have unrealistic expectations that changes are rapid.
Like my colleges, I see the establishment of a common register of rare diseases and rare eye diseases as vital. It is also crucial to increase diagnostic and treatment capabilities of rare eye diseases. It is and it is going to be a hard road, but the journey is the reward. Especially, if we can go along this road together, the whole Europe and the World.
What are the main challenges of the network?
The main challenge is to find a simple, reliable, feasible and sustainable mode of virtual consultations based on real, existing cooperation ties. It is noteworthy that the existing Network of Rare Eye diseases led by Prof. Helene Dollfus functions with a high level social and emotional intelligence. Actually, it is much greater than the wealth of knowledge or a clinic of experts. It is learning new modes of cooperation.
What does Latvia have to do?
First and foremost, Latvia has to establish a network of experts in rare eye diseases and set up a coordination centre. Second, allocate money to develop genetic examination capabilities in Latvia. What is more, to strenghten and maintain a workable, reliable date base of rare eye diseases. It is also necessary to support patients, if it’s possible, to get them involved in clinical trials of rare eye diseases in Europe. Another challenge is to create an effective, reliable, patient centered experts link with the European Network of Rare Eye Diseases. Furthermore, to collate experiences related to rare eye disease cases in a virtual patient book. Next, ensure that there is financial support to cover expert’s work in the country and in Europe. If the expert functions within the framework of the country, the costs should be covered by the respective country. However, if the expert is selected from another country to supervise the virtual case, the financial support could come from the European Union.
And what are the best advances of the network?
Creation and maintenance of virtual cooperation modes and establishment of virtual clinic are important, however personal familiarity with other members of the group, a sense of interconnectedness are the greatest benefits in common meetings and in other activities in member countries and among them.
In your dreams, what would ERN-EYE look like in 10 years?
Either we learn how to cooperate or we vanish, stop existing. It might happen regarding rare diseases and common diseases. It is also a matter of cooperation among different ERNs- for example, ERN-EYE, ERN- Ped cancer, ERN- rheumatologically disorders. The key word is not competition; the key word is collaboration, acquiring new modes of cooperation.
Merry Christmas and a Happy New Year for all of us in ERN-EYE, in other ERNs, in Europe and in the entire world!