On a regular basis, the PAC advises the RD-Connect project coordination office and other project partners from the patient perspective. Participant’s role in the PAC is to serve as an active member of a EURORDIS working group collecting different patient views on issues surrounding registries, biobanking and omics research.
The PAC’s tasks include:
- identifying issues important to patients in the context of the project
- learning/educating other patient representatives about technical, legal, ethical and social issues surrounding the approaches included in the projects by attending capacity building workshops (with full financial support for travel and accommodation)
- communicating on the project’s progress with patient constituents
- participating in regular meetings and conference calls
- contributing to or reviewing policy documents and reports representing patient views
- participating in and distribute questionnaires to patient constituents
- providing constructive feedback to other RD-Connect partners and the Rare Disease Patient and Ethics Council (RD-PEC)
The PAC consists of patients and patient representatives representing the diversity of diseases covered by RD-Connect, EURenOmics and NeurOmics projects and a representative group of EU countries. Membership is voluntary.