Patient Advisory Council (PAC)

The PAC is a group consists of patients and patient representatives formed to inform other RD-Connect members of issues important to patients. 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.

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.

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.

Chair & Contact

Position: Research Infrastructure Project Manager
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Patient engagement

Members

Position: Member of DHAG , DHAG-Representative for Neuromics Project
Organisation: Deutsche-Heredo-Ataxie-Gesellschaft (DHAG)
Area of work: Patient engagement

Organisation: CMT France
Area of work: Patient engagement

Position: Member of SMA Support UK
Organisation: Lakeside Regulatory Consulting Services Ltd.
Area of work: Ethical Legal Social Issues, Impact, Patient engagement

Position: Founder and Chairman
Organisation: Dravet Syndrome Foundation
Area of work: Patient engagement

Position: President of AHC Federation of Europe
Organisation: AHC Federation of Europe
Area of work: Patient engagement

Position: Registry Manager
Organisation: Vaincre la Mucoviscidose
Area of work: Patient engagement

Organisation: Euro HSP
Area of work: Patient engagement
Organisation: Alstrom Syndrome UK
Area of work: Ethical Legal Social Issues, Patient engagement

Position: Allan-Herndon-Dudley Patient Advocate
Organisation: MCT8-AHDS Foundation
Area of work: Patient engagement

Position: Coordinator
Organisation: FEDERG Initiative
Area of work: Ethical Legal Social Issues, Patient engagement

Organisation: Association Française contre les Myopathies (AFM)
Area of work: Patient engagement
Organisation: Deutsche Gesellschaft fuer Muskelkranke (DGM), Initiative SMA
Area of work: Ethical Legal Social Issues, Patient engagement

Position: Patient advocate
Organisation: unaffiliated
Area of work: Ethical Legal Social Issues, Patient engagement

Organisation: NephcEurope Foundation
Area of work: Biobanks, Ethical Legal Social Issues, Patient engagement

Position: Honorary President
Organisation: PRO RETINA Deutschland e.V.
Area of work: Patient engagement

Organisation: unaffiliated
Area of work: Patient engagement

RD-Connect structure:

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