A key objective of PaLaDIn is to be a patient-centric project with a commitment to utilising co-creation methodologies with patients to create resources, particularly the PaLaDIn Interactium® data platform. To deliver effectively on these aims, it is essential to establish a PaLaDIn Patient and Caregiver User Group (PCUG). The members of this group will play a critical role in the co-creation of the Interactium®, and other resources developed within PaLaDIn, by providing patient perspectives and feedback.
The call for expressions of interest to join the PCUG was open for four weeks. An outstanding 149 responses were received, highlighting a high level of enthusiasm from within the Neuromuscular Disease (NMD) community to contribute to the project. From this impressive response, 15-20 members will be invited to join and form a diverse group representing a range of experiences and perspectives across different NMD communities.
These members will play a critical role in guiding PaLaDIn’s work by providing feedback, sharing insights, and ensuring that patient and caregiver perspectives remain at the heart of everything we do. We are looking forward to the group commencing activities in January 2026.
