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MAKING THE UNSEEN SEEN

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

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.

On Tuesday 11th May ARDEnt launched this report during its inaugural webinar.

Watch the webinar recording via the link below to hear speakers from Cambridge Rare Disease Network, Medics4RareDiseases, Rare Revolution Magazine, Niemann-Pick UK and Alström Syndrome UK and view the presentation slides.
This is just the beginning for ARDEnt.  We hope to welcome more collaborators and contributors to the team to explore the 9 recommendations made in the ARDEnt ‘Making the Unseen Seen’ report in more detail and develop workable solutions. The aim is for these to be included in the UK Rare Disease Framework implementation plans being drawn up in 2021.

Interested in joining? Please Contact

Dr Lucy McKay 
for Theme 1 – diagnosis
Rebecca Stewart
 for Theme 2 – health and social care
Jo Balfour 
for Theme 3 – trials and drug development
Or Jess Doyle 
for general info and to express an interest
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