Position

Webmaster

Team

Communications & Development

Responsible to:

Communications Director

Contract duration

Permanent (Full-time: 39 hour week)

Salary

34-38 000 € (based on education, language skills and experience + 1 month performance related bonus & good health plan)

Location

EURORDIS Headquarters Paris, at present: Plateforme Maladies Rares, 96 rue Didot, Paris 14ème, France

About EURORDIS The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDIS’s mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and to fight against the impact of rare diseases on their lives. Created in 1997, EURORDIS is today a leading Health International Non Governmental Organisation (INGO) and is recognised as the largest European Rare Disease Patient Organisation. In 2012, EURORDIS has more than 510 members in 48 countries, 120 volunteers, 25 staff persons in Paris and Brussels and a budget of over 3 million €. It has steadily growing and well balanced revenues both from the public sector (European Commission, national authorities) and the private sector (patient groups membership fees and grants, corporate sponsorship, foundation grants, event fees). EURORDIS has an outreach to 1600 patient groups and works closely with the European Commission, the European Parliament, leading pharmaceutical and biotech companies and European research networks. EURORDIS plays an essential role in the development and in decision making process in the areas of orphan drugs and advanced therapies, specialised hospital centres of care and their European networks, research activities and national strategies on rare diseases. EURORDIS coordinates the annual Rare Disease Day and manages a platform of web sites and social media communication tools.

European Organisation for Rare Diseases Plateforme Maladies Rares – 96 rue Didot – 75014 Paris – France Tel: +33 1 56 53 52 10 – Fax: +33 1 56 53 52 15 – [email protected] – www.eurordis.org Page 1 of 4

Main scope of the post The Webmaster is responsible for the maintenance, update, layout and visibility of: 1. www.eurordis.org (Drupal and Wordpress) 2. www.rarediseaseday.org (Symfony) The Webmaster will be part of the Communications and Development Team, will work under the direct supervision of the Communications Director and will perform his activities closely with the following staff people: - The Communications Director who will supervise the content strategies - The Communications Assistant and Web Content Manager who will furnish content in seven languages - Web Communications Senior Manager (based in Barcelona) who will manage hosting, oversee changes of CMS and /or architectural developments of websites - All staff members depending on content to be updated The transfer of knowledge will be performed in two steps: 1. www.eurordis.org right from the beginning 2. www.rarediseaseday.org during the second semester 2013 The Webmaster will manage outsourcing of technical developments when relevant.

Responsabilities A. www.eurordis.org and weekly eNews www.eurordis.org content is available in 6 languages (EN, FR, DE, ES, IT, PT). The main language is English. Russian is being added for all core content. Additional languages may be added in years to come (ex: Polish, Arabic, Japanese). Translations are performed by paid translators and volunteers. The Webmaster ensures the continual accuracy, completeness and timeliness of information on EURORDIS’ website www.eurordis.org, as well as the attractive and readable presentation and layout of the site. The Webmaster also plays a key role in promoting the site (SEO) and contributing to EURORDIS’ social media outreach. The main priorities of the Webmaster are to:  Manage all technical aspects of EURORDIS’ website www.eurordis.org with exception of the hosting.  Create, gains approval for, and maintain guidelines for the look and feel of the website.  Working under direction of the Communications Director, ensure that the content is always current, especially the home page, news and events pages.  Ensure visual attractiveness of the site.  Propose and implement solutions to web-related requests from the staff.  Develop new sections with special features (e.g. integration of databases, interactive maps, presentations, billboards, calendars, video tutorials, online surveys, etc.).  Put in place a scheduling and warning information system to enable proper management of update and archiving of content.

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 Ensure that content essential to EURORDIS’ current priorities is appropriately posted on the site and linked to the organisation’s social media actions. Ensure that website core content and weekly e-newsletter are available in all languages included in the site (currently 6 languages and Russian in progress).  Track statistics and analytics of EURORDIS websites and social media. The weekly eNews, managed by the Communications Director and Assistant redirects to articles displayed on www.eurordis.org in the 7 languages. The webmaster is responsible for the configuration of the tool and for proposing adequate solutions, which must support Unicode for Russian and eventually Arabic, Japanese, etc. B. www.rarediseaseday.org The Webmaster will be progressively responsible for the revision and update of the content of the Rare Disease Day website. He/she will oversee implementation of new features according to the campaign’s demands (e.g.. online forms, interactive maps, online scrapbooks, newsfeed, applications, widgets, etc.).

C. Transversal activities  Putting in place proofreading function for articles posted to the site  Linking web content with social media actions  Search engine optimisation: Ensuring that adequate and relevant keywords, image tags and page descriptions appear in pages’ meta information for the purposes of increased organic ranking in search engine results  Promoting and establishing systematic links to and from other relevant websites and in particular all member patient organisations through the development of a reciprocal links program  Managing special projects: annual photo and video contest  Selecting, implementing and managing a digital asset management system for photos and videos  Video filming and editing (EURORDIS owns two digital camcorders) As part of the Communications and Development staff and EURORDIS team, the Webmaster assists in other tasks as assigned.

European Organisation for Rare Diseases – EURORDIS – Plateforme Maladies Rares – 96 rue Didot – 75014 Paris – France

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Profile Essential:  HTML/CSS/PHP expert  Comprehensive knowledge of Content Management Systems, in particular Drupal  Fluent in English, writing and speaking  Understanding of classification, tagging, controlled vocabularies  Knowledge of Search Engine Optimisation techniques  Experience in outsourcing developers  Flexible, team worker motivated by the Rare Disease cause  Strong organisational and project management skills  University graduate or equivalent work experience  EU citizen or French working papers (required for non-EU citizens and citizens from Bulgaria and Romania) A plus:  Fluency in French, working level  Third language  Work experience at an international NGO  Video production and editing  Editing and proofreading skills  Professional experience in social media  Knowledge of issues surrounding Rare Diseases Please send your application to [email protected] before 24/07/2012

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