Rare disease and the lessons learned from the COVID-19 pandemic

COVID-19 swept the globe during 2020 leading to significant morbidity and mortality, impacting all aspects of life, including health and social care provision. This report, published today, demonstrates how people living with rare conditions were disproportionately affected.

In early 2020 a cross-sector group of concerned advocates came together to take Action for Rare Disease Empowerment (ARDEnt). They aimed to shed light on the unseen impact of the pandemic on people living with rare conditions to protect the precious existing services and build on any opportunities uncovered.

Information was gathered by a review of the published literature, grey literature review (including government documents, patient advocacy and public health documents) and interviews with key stakeholders, including patients, healthcare professionals, researchers, industry and advocacy groups. Our CEO, Dr Lucy McKay, was the Theme Lead for Theme 1: Diagnostic Delay.

Now the group hope to influence the action plans for the Rare Disease Framework using real data from across different sectors of the rare disease community.

The report is now published, revealing the impact of the pandemic on every stage of the patient journey, from diagnosis to eventual management.

It catalogues the re-assignment of specialists away from rare diseases, the fear of infection, the closure of clinics, the fracture of coordination of health and social care, and the delay or termination of clinical studies.

Report is available here: https://www.camraredisease.org/ardent/?utm_source=Keep+in+touch+with+CRD...

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