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
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10:00-11:00 |
Registration with tea/coffee/pastries |
| 11:00-12:30 |
Getting new therapies: the rare disease problem – Danny Gale |
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Presentations on patient surveys:
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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) |
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Discussion and future plans |
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Round up of day and summary of next steps |
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| 15:00 |
Close |
