Friday 12th July 2024, London
11am – 3pm, Conference Hall, Resource for London, Holloway Road, N7 6PA
Registration opens from 10am with tea/coffee available. 11am start
- An event for Rare Disease Group (RDG) patient representatives and RDG leads which focuses on patient-centred activity and development within the registry.
- There will be interesting presentations and opportunities for networking with fellow patient representatives.
- It will be good to see you there in person!
- On-line option also available.
Outline Agenda items
- Women’s survey
- Loin pain survey
- PREM & KQIP– Kidney Quality Improvement Partnership
- Getting new therapies approved: the rare disease problem (Prof D Gale)
- RaDaR annual survey: Discussion: what are the important questions we should be asking?
- Networking and posters
- Beacon for rare diseases: Developing a rare disease patient support group.
- Discussion and plans
