We R Rare Steering Group Meeting – November 2024

Date and Time: Tuesday 19th November 2024 5.30 – 7.30pm 

Venue: Online –Zoom

Aims of the meeting: 

  • Share initial reactions to ‘DELINEATE’ research study, focusing on acceptability of ask on participants and understanding what measures are important to include 
  • Shape the development of the ‘Metapicture’ database 
  • Update on MRCC strategy and ways to get involved moving forward