EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patient, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. With offices in Paris, Brussels, and Barcelona and staff and volunteers across Europe, here you can be part of a truly international team.
The Rare Barometer programme collects rare disease patients’ perspectives and opinions through qualitative and quantitative data collection methods on important topics for the rare disease community. These data contribute to feeding EURORDIS’ evidence-based advocacy work to improve the lives of people living with a rare disease in Europe. Survey results are disseminated among patient organisations, European and International institutions and various networks and conferences.
Under the supervision of the Rare Barometer Senior Manager, the Survey Project Manager oversees the design, dissemination and analysis of international surveys gathering the experience and perspective of rare disease patients.
Key tasks & responsibilities
- Managing quantitative surveys including drafting questionnaires, implementing the survey in the software, supervising survey fieldwork, drafting reports;
- Managing qualitative research projects, including drafting interview guide, conducting qualitative interviews or focus groups, analysing qualitative material, drafting reports;
- Answering patients’ and carers’ requests regarding the survey;
- Ensuring the integrity of data and reviewing data for anomalies and resolving issues around data;
- Conducting basic and advanced statistical analysis using Sphinx software or another relevant software (SPSS, R, SAS);
- Analysing and codifying open questions from quantitative surveys;
- Drafting reports about the results of the survey;
- Organising and facilitating online or face to face focus groups;
- Facilitating group discussions with patient organisations and other stakeholders around the survey results;
- Maintaining data quality, both in the context of responses to individual surveys as well as for the Rare Barometer survey database
- Conducting literature reviews;
- Transforming survey results into key messages that will be used for EURORDIS advocacy;
- Delivering oral presentations of the survey results.