Lessons learned from the COVID-19 pandemic: Diagnostic delay in rare disease

This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions.

To remediate this, a large group of UK-based and cross-sector stakeholders, known as ARDEnt, assembled to ensure the capture and analysis of what was truly happening to the fragile rare disease infrastructure.

Jointly organised with ARDEnt, this webinar will examine how the diagnostic process in rare diseases was affected by the response to the COVID-19 pandemic.

The journey to a rare diagnosis is already recognised as a long and arduous process and has been coined the ‘Diagnostic Odyssey’. The ARDEnt team found that diagnostic delay has been further exacerbated during the pandemic and the consequences of this will be felt for years to come as the population of people living with an undiagnosed rare disease will have grown bigger in 2020.

Read Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team’s research.

CPD learning applied.

This webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1, to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.

This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.