Since 2008, 28th or 29th February has been a date appointed to raise awareness across the world for the 300 million plus people worldwide living with a rare disease.

The RECORDER team (Registration of Complex Rare Diseases - Exemplars in Rheumatology), led by Fiona Pearce, aims to benefit people with rare diseases primarily through research using electronic health records. The Team's focus is on autoimmune conditions such as lupus, scleroderma, myositis, and vasculitis. 

As 2024 is a leap year, Rare Disease Day falls on the rarest day – Thursday 29^th February. We are attending various events to mark the occasion and connect with the rare disease research and patient community: 

12:30 - 13:30 Rare Disease Day - Patient Centred Research hosted by NIHR Cambridge Biomedical Research Centre.

14.35-15.35 Adam Taylor from the RECORDER group is speaking about the MELODY study in the rare disease session at Health Data Research UK Midlands region webinar Making a difference: Using Data to Improve Care. MELODY is an example of a ground-breaking rare disease study, using national NHS registers to enable mass-recruitment to important COVID-19 research of people with rare diseases, blood cancers and organ transplants by inviting them directly.

Contribute and follow what’s happening on social media with @rarediseaseday and #RAREDISEASEDAY. Or interested to collaborate? Visit our website or email RECORDER@nottingham.ac.uk.