RaDaR Patient Representative meeting 2024

 10:00-11:00     

 Registration with tea/coffee/pastries

 Getting new therapies: the rare disease problem – Danny Gale

 Presentations on patient surveys:

• Female Reproduction, Educational and Developmental Attainments in offspring
• Loin pain in kidney disease
• Kidney Patient Reported Experience Measure (PREM)

 Discussion: RaDaR annual survey - what are the important questions we should be asking? 

 Lunch and networking

 Presentation: Developing a rare disease support group (Beacon: for rare diseases)

 Discussion and future plans

 Round up of day and summary of next steps

 Close