Making the Unseen Seen ARDEnt Report

UPDATE: we have increased capacity as the 100 tickets allocated have sold out.

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. To make visible the unseen impact on rare diseases, so that the existing services for rare patients can be preserved, and the lessons of COVID-19 be learnt for the delivery of future projects.

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 UK framework for rare diseases priorities.

Theme 1: Diagnostic delay

Theme 2: Health and social care coordination

Theme 3: Research and drug development including access to treatment.

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. 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 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.

At the same time, the pandemic has accelerated the evolution of remote monitoring, the adoption of video calling and virtual appointments.

Finally, this report report makes recommendations that should bring patients living with rare conditions into the light and make their management more robust for the future.

Join us at the webinar to hear from the following speakers who will share more details about this crucial report:

Jo Balfour, Managing Director - Cambridge Rare Disease Network

Dr Lucy McKay, CEO - Medics4RareDiseases

Rebecca Stewart, CEO - RARE Revolution Magazine and Trustee - Teddington Trust

Dr Will Evans, GP and Chair - Niemann-Pick UK

Dr Ron Jortner - Trustee -CRDN and Managing Director - Mathead Bioscience Ltd

Kerry Leeson-Beavers - National Development Manager, Alstrom Syndrome UK