ERN CRANIO patient organisations
WHAT THEY DO
āPatient advocates can ensure that ERNs remain truly-patient-centric and achieve their main goal: improving the quality of the care that patients receive and their health outcomes.
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The role of an ERN CRANIO patient representative is to represent the voice and interests of their patient community and act as the bridge between this community and the ERN. Patient representatives work in partnership with the clinicians and researchers in ERN both at an operational level and at a strategic level.
WHAT CAN PATIENT REPRESENTATIVES MEAN TO YOU?
RESEARCH INPUT
Including the patient perspective is one of the essential cornerstones of research. Research that is patient-centered that aligns with patients' needs has proven to get more impact on the received care.
GUIDELINE DEVELOPMENT
Guideline development is one of the key points of ERNs. Involving patient representatives in guideline development and reviewing ensures that all aspects of care that are considered important are included.
GRANT APPLICATION
Including patient organisations in grant applications has proven to result in a higher chance to receive (European) funding. Including the patients' voice is essential for implementation of your project (funding).
OUTREACH & COMMUNICATION
Patients and health professionals in many ERNs have worked together to produce information resources, mainly in English, for health professionals, people living with a rare disease and families, and have made them available on their websites.
EDUCATION & TRAINING
All ERNs have a regular education and training programme for clinicians. Throughout the year, they organise webinars and courses, and they have also organised a short-term exchange programme.
PROFESSIONALIZING PATIENT SUPPORT GROUPS
Patient representatives that are part of ERNs can help you as a healthcare provider or as a patient support group professionalize. For this very purpose, ERN CRANIO patient representatives have created a checklist for patient support groups. Professionalizing patient support groups has several benefits. The ERN CRANIO patient representatives are more than happy to support the professionalization of your support group! Get into contact with them via the contact form here.
