Position

Registry Project Manager (RPM)

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

Main scope of the post: Management of EURORDIS’ participation and achievement of Deliverables in the EPIRARE project. The EPIRARE project is a 30-month DG Sanco project coordinated by the Istituto Superiore di Sanità (ISS) of Italy in collaboration with several high-level academic partners in Europe. The aim is to build a consensus and create synergies to address regulatory, ethical and technical issues associated with the creation and development of rare disease (RD) patients’ registries and to elaborate possible policy scenarios. The project begins on 01/04/2011. EURORDIS is one of the ten associated partners and is specifically responsible for a) participating in project management through the Steering Committee b) conducting a survey with RD patient groups across Europe on their experience and expectations as regards to RD patient registries and c) implementing work package 5 (WP5) - Policy Scenarios on the Scope, Aims, Governance and long-term sustainability of registration of RD patients. The latter being an essential Deliverable for the basis of future EU policy on patient registries. The Registry Project Manager (RPM) is a full-time position dedicated to the management of this project, including management of budget, intermediary and final reports (31/10/2013). The Registry Project Manager will be part of a team unit of five persons dedicated to RD Research and Therapeutics: - Therapeutic Development Director, - Clinical Research Advisor - Drug Development Programme Manager - Research and Therapeutic Dpt. Assistant - Volunteer supporting the Therapeutic Team The Registry Project Manager will work with the Therapeutic Development Director. He/she will be experienced in managing European projects and will be responsible for the fulfilment of EURORDIS’ contractual obligations related to the EPIRARE project.

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He/she will work 100% on the EPIRARE project, specifically on Work Package 5 and also involved in Work Packages 1, 2, 4 and 8. In this context, the Registry Project Manager will be responsible for any relevant EURORDIS activities supporting the establishment and development of RD patient registries at the European and national level as detailed in the next section. Responsibilities He/she will be responsible for the fulfilment of all the EURORDIS contractual obligations and engagements in the context of the EPIRARE project. To this end, the role of the Registry Project Manager is to track the progress of all Work Packages that involve EURORDIS as detailed in the Description of Work (DoW). In particular, he/she will monitor Milestones, Deliverables and Deadlines. The Registry Project Manager will also be in charge, in liaison with the Finance Team, of all the expenses related to the project, calls for tenders and purchase orders, incoming invoices and expenses for the Work Package coordinated by EURORDIS. The RPM will be responsible for WP5, which defines the scope and governance model for registries, representing the interests of relevant stakeholders (national and subnational public health authorities, research, pharma-industry and Pharmaceutical Forum, patients and centres collecting data) in strategic decisions. As part of the EURORDIS’ activities in the field of RD patient registries, the Registry Project Manager will a) organise a capacity-building workshop with Patients’ Associations organised with the participation of academic registries and Centres of Expertise - in conjunction with EURORDIS Membership Meeting in May 2013, b) participate in some European Union Committee of Experts on Rare Diseases (EUCERD) meetings and will organise some EUCERD workshops related to the project, c) develop useful information for the EURORDIS’ website section on registries, d) update the Policy Fact Sheet on Registries or draft future EURORDIS’ position papers and e) support relevant activities in national plans, in particular the French Plan. Background and Work experience Background: University degree in sociology, science or public health. Pre-requisite: Minimum 3 years professional experience in an European or international environment with experience in management of European projects, in a related activity, preferably in the non-profit, humanitarian or health sectors. International background includes occupational stay in various EU Member States, or traineeship/studies. English mother tongue or equivalent or with several years of experience in an English speaking environment; excellent English writing skills; second and third European language would be appreciated. Other additional desired skills: Coordination of transnational projects Experience with databases (with a preference for patient registries Experience with transnational surveys Management with EU projects including reports and budget

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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 project partners and to communicate both with patient groups and other stakeholders - Team working ability; common sense and capacity to evaluate priorities; able to perform under stress and to take initiatives; IT: Word, Excel, PowerPoint. Please send a CV and letter of motivation to [email protected] Deadline for applications: 31/04/2011 Applications are selected by AdenSourcing, our recruitment provider.

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