The Patient Advisory Council (PAC) is comprised of a multidisciplinary group of patients, parents, representatives of patients’ organisations, clinicians, legal academics, sociologists, scientists and ethicists. It informs partners from RD-Connect, EURenOmics and NeurOmics of issues important to patients. This will ensure that all project activities have a patient-centric approach throughout. The PAC is coordinated by an RD-Connect partner, the European Organisation for Rare Diseases (EURORDIS), which synchronizes activities in respective projects and invites patient representatives to meetings and discussions. Issues, concerns or dilemmas brought forth by the PAC are addressed by the Rare Disease Patient and Ethics Council (RD-PEC) as well as all project partners.
On a regular basis, the PAC advises the RD-Connect project coordinator and Governing Board 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 the RD-Connect Governing Board and the 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.