OIFE needs patient representatives

Are you interested in research & policy work?

As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with OI & their families in ongoing and upcoming research projects (patient representatives).

Sign up to join our list of patient representatives!

We have developed a database where people who are interested can register and tell us about their experience and what kind of research they want to be involved in. Are you interested in becoming a patient representative in research & development and/or a patient expert? Then sign up here and we will get in touch!

Guide on patient partnerships in research

Are you uncertain of what a patient representative does? EURORDIS – European Rare Diseases Organisation has together with other stakeholders developed a short guide on patient partnerships in rare disease research projects. We encourage anyone interested in the topic to read it. Click here to download the guide! 

Who can represent OIFE as patient representatives?

The answer to this question can vary from project to project, based on what kind of competence and experience is needed. According to the guide above, terms “patients” and “patient representatives” are used interchangeably and refer to people living with OI and their family members or carers as well as people from organisations that represent the interests of people with OI (i.e. from patient organisations or patient groups). This includes both volunteers and staff members of OI-organizations. The term do not include people who have a professional role in health and social care services. In OIFE we define “patient experts” as people who have substantial knowledge on OI as well as how the system works and is capable of representing the wider OI-community. Usually some kind of education/training is needed to become a patient expert.






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