Role of patient representative panel

The patient representative panel works to:

  • provide a patient voice with the needs of people affected by primary immunodeficiencies (PIDs) at its heart
  • raise awareness of PIDs and help campaign for the rights of people affected by PIDs
  • share experiences of service provision, and advise on and prioritise key projects, support, services and events that PID UK could provide for people with PIDs
  • assist in the design of studies and surveys to improve healthcare for people affected by PIDs
  • help PID UK provide patient-friendly information and to suggest improvements to the information that is given to people when first diagnosed with a PID and throughout their care
  • forge links with PID regional centres and local groups within the UK, and act as a liaison by listening and reporting issues to PID UK
  • be involved in and respond to any consultations concerning provision of healthcare or any other issue relevant to those affected by PIDs.