Position

Training Manager (TM)

Responsible to

Therapeutic Development Director (TDD)

Contract duration

Permanent (CDI)

Salary

34,000-38,000 euros gross annual (39 hours/week)

Location

EURORDIS Headquarters Paris: Plateforme Maladies Rares, 96 rue Didot, Paris 75014, France

Created by: Maria Mavris, Patrice Régnier, Yann Le Cam on: February 2012

Validated by: BoO on: February 2012

Received by: on: signature:

Status: Recruitment version Previous version(s):

Main scope of the post: Management of EURORDIS’ Training activities in particular in the fields of drug development, clinical trials, pharmacovigilance, regulatory affairs, statistics and ethics. These training activities are primarily supported by the EURORDIS’ participation in and achievement of Deliverables in the EUPATI and ECRIN projects. The European Patients' Academy on Therapeutic Innovation (EUPATI) project is a 5-year (2012-2016) project coordinated by the European Patients Forum (EPF) and funded by the Innovative Medicines Initiative Joint Understanding (IMI-JU). This academy led by Patient Organisations and co-led by Pharmaceutical Companies will provide scientifically reliable, objective, comprehensive information to patients on pharmaceutical research and development. It will increase the capacity of well-informed patients to be effective advocates and advisors, e.g. in pharmaceutical development, with regulatory authorities and in ethics committees. EUPATI aims to lay the basis for meaningful involvement and empowerment of patients in pharmaceutical innovation, safety of medicines and access to treatments. EURORDIS is one of the 29 associated partners. The European Clinical Research Infrastructure Network (ECRIN) project is a 4-year (2012-2015) DG Research project coordinated by INSERM (France). ECRIN is a distributed ESFRI-roadmap pan-European infrastructure designed to support multinational clinical research, making Europe a single area for clinical studies, taking advantage of its population size to access. ECRIN-IA will develop e-services, education material to train professionals and patients associations, and communication with users, patients, citizens and policymakers (WP3). It will support the structuring and connection to ECRIN of disease-, technology-, or product-oriented investigation networks and hubs

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focusing on specific areas: rare diseases (WP4), medical device (WP5), nutrition (WP6). EURORDIS is one of the 32 associated partners. The Training Manager will be part of the EURORDIS Operations’ Unit and under the direct supervision of the Therapeutic Development Director. Responsibilities The TM will manage the two projects in all aspects; he/she will be responsible for coordination i) internally, ii) with partners and iii) with project coordinators, as well as achievement of milestones, deliverables and deadlines, writing reports and managing budgets. In the context of EUPATI, he/she will assist Maria Mavris, Therapeutic Development Director and François Houÿez, Information & Access to Therapies Director, respectively responsible for Task Forces 5 (Clinic Trials) and 3 (Pharmacovigilance) in WP4. In the context of ECRIN, the TM will manage the EURORDIS Summer School, in collaboration with Sharon Ashton (Event Manager) for years 2012 to 2015 (integrating 10 participants from the ECRIN network, outside Rare Diseases area). In the context of EUPATI, he/she will implement a new formula of the Summer School for 2015 and 2016. The EURORDIS Summer School is a 4-day training held in Barcelona each year for approximately 40 rare disease patient advocates representing a range of EU countries and different rare diseases. Overall, and as part of the EURORDIS’ activities in the field of empowering patients’ advocates, the Training Manager will a) take over the organisation of the capacitybuilding EURORDIS Summer School, EURORDIS e-learning tool as well as regular webinars b) be responsible for development of content for the clinical trials and pharmacovigilance sections of the EUPATI project in conjunction with other project partners c) be prepared to travel to attend meetings related to the projects described, and d) contribute to the current information on the EURORDIS’ website Training Resources section, such as organisation of capacity building small workshops in the EURORDIS Membership meeting or new developments of the e-learning tool or webinars on topics described in the EUPATI and ECRIN projects in addition to other relevant EURORDIS projects.

Background and Work experience Background (mandatory): Experience in clinical trials and/or pharmacovigilance Pre-requisite: - English mother tongue or equivalent or with several years of experience in an English speaking environment and excellent English writing skills. - Minimum 3 years professional experience in a European or international environment, in a related activity, preferably in the non-profit, humanitarian or health sectors. - Experience in the international project management including working with partners, reports and budget

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Other -

additional desired skills: Experience with training or teaching Experience with EU funded projects (preferably DG Research) Previous employment or traineeship/studies in other EU Member States

Qualities: - Organised, autonomous, reactive, reliable and flexible in order to keep track of different activities, in line with the multi-task aspect of the position - Empathy; driven by patient needs - Ability to work with different stakeholders and to communicate / engage with patient advocacy groups - Team working ability; common sense and capacity to evaluate priorities; able to perform under stress and to take initiatives;

IT: Word, Excel, PowerPoint Deadline: March 31st 2012

Please send your letter of motivation and CV in English to: [email protected]

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