Every month, ERN-EYE invites you to meet an active person within the network through a short interview. This month, it’s Petia Stratieva, MD/Ph.D, ePAG representative, Founder of Retina Bulgaria and Special Projects Manager at Retina International who accepted to answer our questions.
“The most important issue ERN-EYE can overcome is, firstly, the equality of European patients in terms of access to a virtual expert advice and, secondly, to ensure provision of quality care for the European patients with rare eye diseases wherever they live.”
What is your concrete role in the ERN-EYE network?
I’m member of the ePAG – the European Patients Advocacy Group of patients and family members. Collectivly, our ePAG group represents the perspective and interests of the patients and families affected by rare eye diseases and the organizations representing them. Our role is to contribute to the ERN-EYE Board and Working Groups by providing the patient perspective on all relevant aspects of the ERN-EYE strategic policy and organizational processes. Our main task is to promote and encourage a patient centric approach in setting research objectives, delivery of clinical care and improvement of services. Personally, I represent patients with inherited retinal diseases, an area where a substantial amount of research is ongoing and we, the patients, would like to contribute to the acceleration of the research outcomes. Naturally, I’m part of the Retina Working Group of the ERN-EYE.
The patient organization I represent – Retina Bulgaria and our umbrella global organization – Retina International – are seeking to improve the access to genetic testing, establish interoperable patient registries and improve access to clinical trials for those who are living with these blinding retinal conditions. Therefore, the collaboration with the clinicians and the researchers within the Genetic Diagnostics transversal working group is among my priorities.. I’m member of the low vision and patient daily care working group as well. Unfortunately, I’m the only patient representative from Eastern Europe.
In your opinion, what is the most important issue ERN-EYE could overcome?
I come from Bulgaria – a country which doesn’t have any kind of expert center related to the ERN-EYE. There are no clinical trials ongoing in the country, the eye doctors, regretfully, aren’t familiar with the role of genetic testing and counselling, patients aren’t referred for genetic diagnostics. The patients are searching for expert advice and treatment by themselves and often outside the EU – in Turkey, Russia, USA due to the lack of information and lack of awareness about the ERN-EYE. The most important issue which I’m very much hoping the ERN-EYE can overcome is, firstly, the equality of European patients in terms of access to a virtual expert advice and, secondly, to ensure provision of quality care for the European patients with rare eye diseases wherever they live.
What are the main challenges of the network?
The sustainability of the network is among the major challenges. The controversial political engagement and the variability of support in the different countries is a barrier for some hospitals to join the ERN-EYE. Unfortunately some countries remain fully outside of the network despite the patient’s needs in that country.
And the best advances?
Building a collaborative platform of clinicians, researchers and patients . The development of clinical and other guidelines is already underway. The CPMS now exists, however, despite its potential it is underutilized. The basic patient registry is on the way and this will be a very significant advance for the community at large.
In your dreams, what would ERN-EYE look like in 10 years ?
I dream about a vibrant network of clinicians, researchers and patients collaborating with networks outside the EU and contributing to the prompt development of life transforming therapies, using interoperable patient registries. I dream about a network that can bring quality clinical care based on precise clinical guidelines produced by the ERN-EYE and adopted at a national level, including Central Europe. I dream about a network equipped to deliver standards for social care for people affected by disabling conditions I believe that we, the patients, will be able successfully contribute to the development and dissemination of patient information, best practice, care pathways, guidelines and policies.