We R Rare Steering Group Meeting – May 2024

Date and Time: Tuesday 21st May 2024 6.00 – 8.00pm 

Venue: Online –Zoom

Aims of the meeting: 

  • Gain initial views on project – developing patient reported outcomes (PROs) and patient reported outcome measures (PROMs) in clinical trials on rare conditions  
  • Shape protocol by sharing views on acceptability, recruitment messages and any potential areas of concern 
  • Begin discussion on priorities for We R Rare Steering Group