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

Action for Rare Disease Empowerment (ARDEnt)

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.

Report Findings

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.

Read and download the report here


Webinar –  Tuesday 11th May at 7pm

ARDEnt is hosting a webinar on Tuesday 11th May at 7pm to elaborate on the findings of the report; discuss the recommendations and make a call to action.  This event is free to attend and is particularly aimed at people living with rare diseases, advocates and patient advocacy group representatives.

 Book your webinar place here