Assistente Coordenador de projetos sociais para Organização europeira de Doenças Raras

Social Projects Assistant Manager (SPAM) – Barcelona

— Applications must be in English —
— Applications and CVs in Portuguese will not be considered —

Organisation: EURORDIS Rare Diseases Europe
Location: Barcelona Office – Calle Sant Antoni Mª Claret 167
Contract type: Full time (39 hours/week)
Starting date: February 2017
Salary: 22.000-25.000 euros gross annual
Reporting to: Social Policy Senior Manager
Working language: English

1.Background

About EURORDIS
EURORDIS (Rare Diseases Europe) is a leading International Non-Governmental Organisation. It is the voice of 30 million people affected by rare diseases in Europe, representing over 700 rare disease organisations in 64 countries. EURORDIS works to improve the quality of life of those living with a rare disease: via advocacy at the European level; capacity building of patient and creation of networking opportunities for patient organisations/representatives; and raising awareness of rare diseases.

About Rare Diseases
A rare disease affects maximum 1 in 2,000 people. There are over 6,000 rare diseases and collectively they affect over 30 million people in Europe. They are mostly chronic, highly complex and often generate multiple disabilities or impact the daily life in a disabling way. People with a rare disease and their families are therefore particularly isolated and psychologically, socially, economically, culturally vulnerable; their unmet social needs affect their autonomy and their fundamental human rights.

EURORDIS’ ongoing social projects

INNOVCare (2015-2018; EU-funded project)
The INNOVCare project focuses on voicing the needs of people with a rare disease and on bridging the gaps between health and social services to achieve holistic care for rare diseases. EURORDIS is responsible for three work packages: “Communication”, “State of the Art of Social Care Provision to Rare Diseases” and “European Network of Resource Centres for Rare Diseases”. EURORDIS’ role consists mainly of:
• Collecting patients’ perspectives and ensuring patient representation;
• Facilitating the creation of a European network of resource centres for Rare Diseases;
• Organising multi-stakeholder workshops;
• Encouraging coherency between the projects’ work packages;
• Ensuring the link with rare disease advocacy and the rare disease community.

Capacity building for youth (2017-2018)
EURORDIS is currently developing its youth training programme aiming at building the capacities of young people living with a rare disease, representing a diversity of diseases and European countries.

2. Main scope of the position

Support the implementation of EURORDIS’ tasks within the INNOVCare project and related activities in the scope of social policy/services, integrated health-social care and capacity building for young people with a rare disease.
The SPAM will be part of the EURORDIS’ Operations Unit, under direct supervision of the Social Policy Senior Manager, and will liaise with EURORDIS’ members, volunteers and partners, as well as other rare disease stakeholders, within the scope of her/his responsibilities. The SPAM will be based in Barcelona, and will be required to travel within Europe as necessary.

3. Responsibilities

Project Management
• Track record of documents, timelines, milestones of the project;
• Elaboration of project documents and reports;
• Administrative organisation and communication with project partners;
• Support to elaboration of grant applications for new projects within social policy to continue INNOVCare’s mission.

Support to elaboration of policy, good practice and capacity building documents
• Researching issues and good practices;
• Support to elaboration of policy, good practices documents;
• Support to elaboration of capacity building materials for patient representatives;
• Support to the elaboration of scientific publications/poster abstracts for conferences.

Communication and organisation of events
• Organisation and follow up of meetings/workshops including: invitations, management of registrations, coordination of logistics, onsite support, minutes and follow up of reimbursement procedures to participants;
• Elaboration of short texts for website/newsletter/social media on social policy issues;
• Update of the innovcare.eu website content;
• Preparation and send out of mass emails;
• Moderation of discussion groups on rareconnect.org on social policy issues;
• Ensuring update of contacts on EURORDIS’ contact database;
• Support the organisation of EURORDIS youth training programme.

4.Background and Work experience

Education / Experience
• University degree in social sciences (e.g. sociology, communication, political sciences)
• 2 years of professional experience

Languages
• Fluency in written and spoken English
• French or Spanish desirable; other European language/s a plus

IT
• MS Office
• Back Office web content platforms experience desirable (i.e. WordPress)
• Able to adapt to new software/quick learner

Additional skills/qualities desired:
• Interest in health/social issues affecting patients with complex debilitating diseases;
• Experience in the humanitarian/health sector and in an international environment (professional or volunteer); Experience with EU-funded projects is a plus;
• Ability to work and engage with individuals from different backgrounds; team player;
• High level of organisation and attention to detail;
• Strong analysis and synthesis ability;
• Fast learner, good problem solver, autonomous and goal-oriented;
• Hard-working, reliable, able to deliver within deadlines and flexible, in order to keep track of different activities, in line with the multi-task aspect of the position.

5.How to apply
Please send your CV (with photo) and cover letter in English to
raquel.castro@eurordis.org

Deadline for applications: 08/12/2016

Applications submitted via other contact means – e.g. other EURORDIS emails, phone, netempregos website – will not be considered