Friday 12th July 2024, London and online
PDFs of presentations:
Getting new therapies: the rare disease problem - Danny Gale, RaDaR Director
Fertility, Reproduction, Educational and Developmental Attainments in offspring: the FREDA study - Hannah Beckwith, King's College London
Kidney Patient Reported Experience Measure - Leeanne Lockley, KQIP
Developing a rare disease support group - Hannah Harvey, Beacon for Rare Diseases
Agenda
| 10:00-11:00 | Registration with tea/coffee/pastries |
| 11:00-12:30 | Getting new therapies: the rare disease problem – Danny Gale |
| Presentations on patient surveys:
| |
| Discussion: RaDaR annual survey - what are the important questions we should be asking? | |
| 12:30-13:15 | Lunch and networking |
| 13:15-15:00 | Presentation: Developing a rare disease support group (Beacon: for rare diseases) |
| Discussion and future plans | |
| Round up of day and summary of next steps | |
| 15:00 | Close |