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ERN-EYE started its activities the 1st March 2017. Since then, our activities grew up and new needs appeared.
Please find here the open positions in ERN-EYE and join us to serve better care for Rare Diseases in Europe!
The Scientific Project Manager will work under the responsibility of the Chief of department & ERN-EYE Coordinator, (Pr Hélène Dollfus) and in close collaboration with ERN-EYE Project Manager as well as the other members of the ERN-EYE management team. He/she will be also involved with the team coordinating national network for rare sensorial diseases SENSGENE based also in Strasbourg.
The Scientific Project Manager will be in charge of:
The Medical Writer will work under the responsibility of the head of department, ERN-EYE and SENSGENE Coordinator, Pr Dollfus. The Medical Writer works daily directly with the ERN-EYE Project Manager and SENSGENE Project Manager.
Clinical guidelines and good practices recommendations are essential for professionals to ensure the best quality of care. As reference networks, the European Reference Network for Rare Eye Diseases ERN-EYE and the French network SENSGENE are in charge of producing and spreading these high-quality standards documents.
The Medical Writer will be responsible of the writing of high-quality clinical guidelines or good practices recommendations, based on the best experts’ opinion in Europe and an accurate and up-to-dated literature review.
The European Guidelines will follow the rules edited by Agencia de Calidad Sanitania de Andalucia (ACSA), appointed by the European Commission recently, and the French guidelines are based on the PNDS standards, edited by the HAS.
The Medical Writer collaborates with the physicians and perimedical staff network who are members of specific working groups to prepare high-quality clinical guidelines, related regulatory documents, clinical publications, and related clinical documents within agreed-upon timelines. He/she will be responsible of organizing the work between experts, ensure the smooth running of the writing process and ensure the respect of all the quality standards of the produced documents.
We aim to significantly improve the care and treatment of patients suffering from rare eye diseases by collecting basic epidemiological data through the creation and implementation of a RED registry. The REDgistry project, ancillary to ERN-EYE, consists in the development of a basic registry for all ERN-EYE members in Europe. This project is granted to receive European funds and need to be managed daily to deal with all the steps of the development of an IT solution, including interoperability with other systems and its legal requirements.
The REDgistry Project Manager will provide support to REDgistry project, working with the ERN-EYE Project Manager and other team members (communication team, helpdesk team) to achieve both projects success. REDgistry Project Manager will also work in direct collaboration with the HUS teams, mainly IT and legal departments.
This year, ERN-EYE is launching the virtual clinical activities to share and deal with challenging clinical cases and to bring our collective expertise to all patients across Members of ERN-EYE. Based on a IT tool provided by the European Commission, called Clinical Patient Management System (CPMS), the virtual clinic starts these days. To help all the users with this new tool, ERN-EYE set up a helpdesk constituted by an IT technician and a medical fellow. This fellowship programme started the 1st October 2018, this activity continues with a new fellow each year, starting the 1st of october, we are looking for a new fellow from the 1st October 2020.
This fellowship position is co-funded by the European Commission Innovation & Networks Executive Agency (INEA) – Connecting Europe Facility (CEF) - and by the Hôpitaux Universitaires de Strasbourg (HUS). 75% of the time will be dedicated to ERN-EYE missions and 25 % to the clinical daily mission of the centre of reference dedicated to Rare Eye Diseases CARGO in Strasbourg.