NDRS Webinar: Rare Disease Registration

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This webinar gives an overview of NDRS’s work on rare diseases and the benefits of working in partnership for rare disease registration.

About this Event

This autumn the National Disease Registration Service (NDRS) is running a series of webinars to continue to share information about our latest work and developments. Each lunchtime webinar will focus on a different area of NDRS and there will be an opportunity to ask questions following the presentation.

The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) forms part of NDRS and collects and analyses data on congenital anomalies and rare diseases.

This webinar on rare diseases will include 3 presentations:

1. An introduction to NDRS’s work on rare diseases (Mary Bythell, Head of Rare Disease Registration, PHE).

2. Putting national rare disease registration into context – what are the benefits for patients and stakeholders? (Peter Lanyon, Consultant Rheumatologist, Nottingham University Hospitals) .

3. What can be achieved through partnership working – the Registration of Complex Rare Diseases - Exemplars in Rheumatology Project (RECORDER) (Fiona Pearce, Clinical Lecturer, University of Nottingham).

Attendees will be sent joining instructions for the webinar 2 days beforehand. The webinar will be hosted on Microsoft Teams and will be accessible across desktop, browser and mobile (iOS or Android). Slides from presentations will be shared with attendees after the event.

If you have any questions about this webinar or registering to attend, please contact

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