At the beginning of the Covid-19 pandemic of early 2020, a group of concerned advocates came together to take Action for Rare Disease Empowerment (ARDEnt). The ARDEnt group’s aim was to shed light on the unseen impact of the pandemic on people living with rare conditions in order to protect the existing services for people living with rare conditions and lessons can be learned.
Following cross-sector stakeholder discussion, three priority themes were identified under which evidence would be collated. These have subsequently been included as three of the four priorities highlighted by the UK Rare Diseases Framework.
Priority 1: helping patients get a final diagnosis faster
Priority 2: coordination of care
Priority 3: improved access to specialist care, treatment and drugs
ARDEnt gathered information 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. Although the focus of this review was the UK, the information search was not restricted to the UK.
This report reveals 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 disease, 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.
At the same time, the pandemic has accelerated the evolution of remote monitoring, the adoption of video calling and virtual appointments.
Finally, this report makes recommendations that should bring patients with rare disease into the light and make their management more robust for the future.