EJP RD: Chargé de communication (anglophone) H/F

Le/la responsable de la communication définit la stratégie globale en matière de communication et d’information du programme EJP RD (European Joint Programme on Rare Diseases) et IRDiRC (International Rare Diseases Research Consortium). Il/elle met en oeuvre des actions de communication vers les différents publics. Il/elle interagie avec multiples partenaires/interlocuteurs internationaux pour la mise en place de la stratégie de communication. Il/elle promeut l’image et l’identité d’EJP RD et d’IRDiRC.
Ce poste offre une opportunité unique de création de la stratégie de communication pour un
programme européen d’envergure.
Elaboration et mise en œuvre du plan annuel de communication en collaboration avec le
groupe opérationnel du EJP RD et IRDiRC
– Design et management du site web du programme EJP RD
– Définition des cibles et des priorités en vue de la réalisation des supports de
– Elaboration des newsletters et flashs info (recherche de sujets d’articles, interviews,
rédaction, mise en forme)
– Elaboration et mise en forme de contenus (notes, leaflets, dossiers, présentations power
– Extraction et traitement d’information pertinente vers les publics ciblés
– Animation des réseaux sociaux
– Organisation des manifestations publiques : institutionnelles, scientifiques

Date souhaitée de prise de fonctions: 1 septembre 2020

Pour plus d’information: EJP RD – Chargée de communication – anglophone


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 program started the 1st October 2018, this activity continues with a new fellow each year, starting the 1st of October; they are looking for a new fellow from the 1st October 2020.

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 (Mrs Dorothée Leroux) as well as the other members of the ERN-EYE management team. He/she will be also involved with the team coordinating the national network for rare sensorial diseases SENSGENE based also in Strasbourg (Mrs Marilyne Oswald, Project manager). He/she will be in close contact with the HUS offices (research and communication departments especially). More info: Job – Scientific Project Manager – ERN EYE

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. More info: Job – Medical Writer – ERN EYE.

Additional info on the #3 opening positions can be found here.


Located in Paris at the heart of the largest European hospital, Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Telethon, a patient’s organization. Its goal: Promote Myology and have it accepted as a standalone clinical and scientific discipline. The Institute of Myology coordinates, around the patient, medical care, basic research, applied research, clinical research and teaching. Main Purpose The main objective of the post is to provide helpdesk support to the European Reference Network, EURO-NMD, and the Coordination team. This role will support the administrative systems and platforms which facilitate this network and to provide support to the Network Partners and Coordination team at the Institute of Myology.

More info and detailed can be seen here.


Fondazione Telethon is a major Italian charity focused on rare genetic diseases. Founded in 1990, its mission is to fund biomedical research advancement towards the cure of rare genetic diseases neglected by major public and private investments. Its ultimate goal is to make therapies available to all patients in need. The Business Development Office is working to add value to the know-how, intellectual property, human resources and research facilities arising from Telethon-funded research in order to generate new therapies and diagnostic products for the benefit of patients affected by rare genetic diseases.

The TTA will operate within the Business Development Office and should report to the Technology Transfer Manager responsible for overseeing the technology transfer activities related to research conducted outside the Telethon institutes. Fondazione Telethon is a partner in the EJP RD and among its objectives, the project is aimed at developing and implementing an efficient model of financial support to research coupled with an accelerated exploitation of research results for the benefit of patients. The Business Development Office has a major role in coordinating technology transfer activities for the research projects funded under the EJP-RD. The TTA will work closely with the relevant partners within the EJP to identify translational research projects and define the best development path and strategy for each project. With the same aim, the TTA will collaborate with Telethon Program Managers overseeing Telethon-funded research on the exploitation of the results arising from such research.

For more info, click here.