The ARRK Working Group recognise the importance of consumer involvement in the design and implementation of research projects. We believe that people who are affected by these conditions are able to provide valuable insight into the research priorities for patients and their families and help identify goals we should aim for when designing research projects.
As a result we are working to form a patient consortium or working group. It will meet separately to the health professional working group but the ARRK lead will sit on both. The meetings will generally take the form of teleconference with occasional face to face meetings. The outcomes generated from the consortium meetings will be fed back to the working group to help shape ARRK policy and research priorities.
If you would like to join or know more about the consortium, then please contact us using the links provided below.