1f. Better care for people with rare diseases
Track 6
| Thursday, November 21, 2024 |
| 10:30 AM - 11:30 AM |
| Meeting Room 6 (Level 2) |
Details
60min clinical presentation | Rare diseases (RD) such as cystic fibrosis and spinal muscular atrophy affect 2 million Australians. The Australian Government funded Rare Disease Awareness, Education, Support, and Training (RArEST) Project, is a partnership with the national peak body for Australians living with a RD, Rare Voices Australia, GPs and other multi-disciplinary clinicians and researchers, and aims to support implementation of the Australian Government’s National Strategic Action Plan for RD.
Learning outcomes;
- Identify resources to support effective care for people living with RD
- Acknowledge the importance of the patient voice in the design of resources to support their care
- Reflect on personal professional development needs to support RD care.
- Identify resources to support effective care for people living with RD
- Acknowledge the importance of the patient voice in the design of resources to support their care
- Reflect on personal professional development needs to support RD care.
Speaker
Mr David Glasson
Head of Rural Faculty
RACGP
Session chair
Biography
Dr Elizabeth Lissiman
General Practitioner
Curtin Medical School
Better care for people with rare diseases: Co-designing primary care clinical resources
Biography
Dr Libby Lissiman is a GP based in Perth. She has worked clinically as a GP for the last 10 years. Libby currently teaches at Curtin Medical School and has been involved in the RArEST Project (helping to improve care for people living with a rare disease) as a GP Advisor.
Dr Elizabeth Emma Palmer
Clinical Senior Lecturer
Discipline of Paediatrics and Child Health, Faculty of Medicine and Health, UNSW
Better care for people with rare diseases: Co-designing primary care clinical resources
10:30 AM - 11:30 AMBiography
Dr (Elizabeth) Emma Palmer is a clinical geneticist at Sydney Children’s Hospital and senior clinical lecturer at UNSW Sydney. She led the collaborative co-design of Australia’s first National Recommendations for Rare Disease Health Care launched in Federal Parliament in February 2024.
