Delay to Diagnosis – Update

 

The Delay to Diagnosis project launched last year with two inspiring and unique Global Forum events, attracting interdisciplinary participants, over half of whom were patients, from five continents to discuss the issues around diagnostic delay in axSpA patients. Since then, we have created dedicated project webpages, which include information about the project, videos of patients and experts talking about the delay; presentations from our Global Forum events; as well as the latest research and resources.

The Delay to Diagnosis report is in development. This global burden statement will bring the patient voice to the forefront of the discussion while drawing on the latest research evidence.

We know that people suffer in different ways while waiting for their diagnosis and that the psychological, social and physical effects can be long-lasting or even permanent. This situation, and the reasons it occurs, are the messages we want to amplify and propel to the forefront of the axSpA debate.

The report will be launched in mid-2021 – more details will be available soon.

We will provide our members with a social media tool kit to help them promote the critical messages within the report and will be sharing excerpts and case studies prior to the launch to enable some prelaunch promotion.

Other Projects