NDRS Webinar: Rare Disease Registration – November 2020

The NDRS Webinar on Rare Disease Registration took place live on Wednesday 25th November.

This webinar explored:

  • an introduction to NDRS’s work on rare diseases
  • benefits to patients and stakeholders of rare disease registration
  • opportunities for partnership working
  • case study of the RECORDER project (Registration of Complex Rare Diseases – Exemplars in Rheumatology Project)

You can access the recording of the webinar here

The presentations start at 2 minutes 27 seconds. We had some difficulty with the technology during the live webinar. We plan to upload an edited version of the recording soon to make sure you can hear and see all the presentations well.

You can access the presentation slides from the webinar here.

A written summary of the Q and A will be uploaded here soon.

You can contact the Rare Disease Registration team directly by emailing:



This is the fourth in a series of six NDRS Webinars in Autumn 2020. Find more information and booking details here.