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Located in Paris at the heart of Europe’s largest hospital, the Pitié-Salpêtrière, the Institute of Myology was created in 1996 under the impetus of an association of patients and parents of patients, the AFM-Telethon. Its objective is to promote the existence, recognition and development of myology as a clinical and scientific discipline in its own right. The Institute of Myology coordinates medical care, fundamental research, applied research, clinical research and teaching, all unwaveringly focused on the patient.

Background information:
European Reference Networks (ERNs); aiming to facilitate discussion on complex or rare diseases and conditions; are virtual networks involving healthcare providers from across Europe. EURO-NMD is one of 24 European Reference Networks approved by the European Commission to enable equity of care for patients with rare neuromuscular diseases (NMDs), forming a broad group of related disorders that represent a major cause of mortality and lifelong disability in children and adults.

Purpose of the position:
You will be responsible for supporting EURO-NMD’s internal and external communications strategy, writing and disseminating relevant content related to the activity, and responding to requests from healthcare providers and patient representatives.

Primary Duties & Responsibilities:
1. Responsible for the maintenance of the main ERN communication tools and platforms, such as the website, enhancing its content, newsletters, training materials, as well as the deployment of the global IT platform provided by the European Commission.
2. Ensure search engine optimization (SEO) of the website pages.
3. Ensure website security and communicate policies and procedures to users.
4. Manage website content and ensure frequent short-term updates via feedback from all stakeholders for real-time information dedicated to the community.
5. Ensure the writing and deployment of news bulletins, brochures…
6. Plan and manage the design, content and production of all communication materials.
7. Prepare, write and distribute ERN monthly newsletters.
8. Manage the subscriber list and ensure that it is updated in real time in order to respond quickly to subscribers’ questions and expectations.
9 . Be the main contact in case of problems to provide a quick response to users.

Profile required :

  • Higher education (Bac+3) in marketing/digital communication, combined with 3 to 5 years experience
  • Qualification in editorial and digital communication, web development and use of software such as Microsoft, CompTIA, Cisco, CSS, HTML, Javascript, MySQL, & PHP.
  • Relevant qualification in communication and digital in the field of health and/or neuromuscular disease research would be a plus!

Skills required:

  • IT on multiple platforms
  • Graphic design and website design/updates
  • Experience in creating and producing newsletters, reports, website content and other digital and print communication materials.
  • Training and technical assistance to users of IT tools.
  • Bilingual in English

Desired skills:

  • Ability to work in a team
  • Autonomy, organizational skills
  • Management of priorities and deadlines
  • Ability to listen and dialogue
  • Ability to arbitrate and solve problems
  • Reactive and available to ensure an efficient service to users
  • Demonstrate patience and pedagogy towards users
  • Identify the stakes and integrate all the dimensions of a situation
  • Ability to synthesize information
  • Pragmatism

Some travel is required.

This position is based at the Institute of Myology (Pitié Salpêtrière Hospital, Paris 13).
Please send your application (CV + cover letter) by e-mail to the following address:

See the full job announcement in French and in English via the official website of the Insitute of Myology.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit