The Rare Disease Project ECHO® Clinical Community of Learning Practice is a continuing professional development activity delivered via interactive webinars. The ‘hub-and-spoke’ outreach model connects health providers (‘spokes’) to a multidisciplinary team with expertise in rare disease (‘hub’).
The webinars start with a presentation on a specific topic from an expert. This is followed by reflective discussion, which all participants are encouraged to join.
The sessions are held online via Zoom on a Thursday evening once a month.
Date | Time | Topic | Link |
19 Sept 2024 | 7pm Sydney 7pm Brisbane 6:30pm Adelaide 5pm Perth | Mental health and wellbeing | https://echo.zoom.us/j/89207845349 |
17 Oct 2024 | 7pm Sydney 6pm Brisbane 6:30pm Adelaide 4pm Perth | Achieving early diagnosis | https://echo.zoom.us/j/89771956429 |
7 Nov 2024 | 7pm Sydney 6pm Brisbane 6:30pm Adelaide 4pm Perth | Innovative clinical trials access models | https://echo.zoom.us/j/89775115783 |
5 Dec 2024 | 7pm Sydney 6pm Brisbane 6:30pm Adelaide 4pm Perth | Clinical yarning | https://echo.zoom.us/j/89031678376 |
Rare Disease Project ECHO® is a collaboration between Rare Voices Australia, UNSW Sydney, Rare Diseases NSW, and the Rare Care Centre, bringing together clinical, research and lived experience expertise.
Joining the Rare Disease Project ECHO® community can have many benefits, including:
- Establishing referral pathways across Australia to reach rare disease subject matter experts
- Supporting with the diagnosis and management of rare diseases
- Introducing resources for health professionals and their patients
- Connection to a multidisciplinary network of like-minded health professionals
Rare Disease Project ECHO® is an RACGP-approved CPD activity. However, the sessions are valuable for all health professionals.
Previous Rare Disease Project ECHO® Series
The session summaries from previous series held in 2022 and 2023, and recordings of the introductory talks from experts in the first series, are available below.
Series 1 (2022-2023)
Session 1: Rare Disease Facts and Figures and the Importance of Lived Experience
Presenter: Nicole Millis, Chief Executive Officer, RVA
Resources: Session Recording | Session Summary (PDF) | Family GENES (PDF)
Session 2: Mental Health and Wellbeing – Unique Needs and Resources Pathways
Presenter: Louise Healy, Education and Advocacy Manager, RVA
Resources: Session Recording | Session Summary (PDF)
Session 3: Communication About Rare Diseases
Presenter: Stephanie Broley, Genetic Counsellor, Rare Care Centre, Perth Children’s Hospital
Resources: Session Recording | Session Summary (PDF)
Session 4: Diagnostic Odyssey – Tools for Diagnosis and Referral Pathways
Presenters: Professor Gareth Baynam, Clinical Geneticist, Rare Care Centre, Perth Children’s Hospital and Dr Emma Palmer, Clinical Geneticist, Sydney Children’s Hospital.
Resources: Session Recording | Session Summary (PDF)
Session 5: Genomics – Carrier Screening, Prenatal Testing, Direct to Consumer Genetic Testing
Presenter: Dr Emma Palmer, Clinical Geneticist, Sydney Children’s Hospitals Network
Resources: Session Recording | Session Summary (PDF)
Session 6: Whole of Life Care
Presenter: Rare Care Centre, Perth Children’s Hospital
Resources: Session Recording | Session Summary (PDF)
Session 7: Partnering with Patient Advocacy Groups
Presenter: Louise Healy, Education and Advocacy Manager, RVA
Resources: Session Recording | Session Summary (PDF)
Session 8: Rare Disease Research
Presenter: Dr Falak Helwani, Research and Evaluation Manager, RVA
Resources: Session Summary (PDF)
Series 2 (2023)
Session 1: Supporting patients before, during, and after a rare disease diagnosis
Presenters: Michele Hemmings, Patient Pathways Telehealth Nurse, and Clare Stuart, Policy and Advocacy Manager, RVA Partner Mito Foundation
Resources: Session Summary (PDF)
Session 2: Rare disease patient communication and empowerment
Presenter: Dr Manjekah Dunn, Junior Doctor, Sydney Children’s Hospitals Network and researcher in the GeneEQUAL team
Resources: Session Summary (PDF)
Session 3: Supporting the whole family of people living with a rare disease
Presenter: Rebecca Saad, nurse consultant at Sydney Children’s Hospitals Network
Resources: Session Summary (PDF)
Session 4: Coordinating and connecting care for people living with a rare disease
Presenters: Christian Meagher, a researcher from the Brain Aid team at the University of New South Wales (UNSW) and Michelle Farrar, Professor of Paediatric Neurology at UNSW Sydney
Resources: Session Summary (PDF)
Session 5: Innovative approaches to rare disease prevention and care
Presenter: Libby Massey, Director, Research, Clinical Services and Education at MJD Foundation
Resources: Session Summary (PDF)
Please email the RArEST Project team with any queries you may have about Rare Disease Project ECHO® or the RArEST Project: [email protected]