On February 27th 2024, the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) hosted its inaugural parliamentary event at the Senedd, marking a significant step in raising awareness of rare autoimmune rheumatic diseases (RAIRDs) in Wales. The event, a drop-in session, was kindly sponsored by Joel James MS, following a productive meeting with RAIRDA representatives Sue Farrington and Anna Coupland in December 2023.
The drop in session witnessed an impressive turnout, with 17 MSs in attendance. Attendees had the opportunity to hear firsthand from individuals living with RAIRDs, gaining insights into their experiences and the challenges they face in gaining satisfactory care.
Following the event, there was good engagement on social media platforms, with MSs sharing content and expressing support for RAIRDA’s cause. Llyr Gruffyd MS championed RAIRDA’s cause in an interview with the Rhyl, Prestatyn, and Abergele Journal, further amplifying awareness of RAIRDs in the region.
RAIRDA will be looking to build on this engagement in the rest of 2024, including through the use of data gained through our patient satisfaction survey that is set to launch shortly.
