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.
| Date | Time | Topic | Session Resources |
| 16 Sep 2025 | 6pm Sydney 6pm Brisbane 5:30pm Adelaide 4pm Perth | When Common Symptoms Point to Uncommon Diseases: A GP’s Detective Toolkit | Session Recording | Session Summary (PDF) |
| 7 Oct 2025 | 6pm Sydney 5pm Brisbane 5:30pm Adelaide 3pm Perth | Coordinating Care When Systems Fail: Your Roadmap for Rare Disease Management | Session Recording | Session Summary (PDF) |
| 28 Oct 2025 | 6pm Sydney 5pm Brisbane 5pm Adelaide 3pm Perth | Two-Way Learning: Integrating Cultural and Clinical Expertise in Rare Disease Care | Session Summary (PDF) |
| 18 Nov 2025 | 6pm Sydney 5pm Brisbane 5pm Adelaide 3pm Perth | From Crisis to Confidence: Rebuilding Trust with Rare Disease Families After Medical Trauma | Session Recording | Session Summary (PDF) |
| 9 Dec 2025 | 6pm Sydney 5pm Brisbane 5pm Adelaide 3pm Perth | Unlocking Tomorrow’s Treatments Today: Navigating Clinical Trials and new Therapies for Your Rare Disease Patients | Session Recording | Session Summary (PDF) |
| 3 Feb 2026 | 6pm Sydney 5pm Brisbane 5pm Adelaide 3pm Perth | Whole-Person Care: Practical Mental Health Tools for Rare Disease Patients and Families |
Rare Disease Project ECHO® is a collaboration between Rare Diseases NSW and Rare Voices Australia, 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)
Series 3 (2024)
Session 1: Mental Health and Wellbeing
Presenter: Louise Healy, Education and Advocacy Manager, Rare Voices Australia
Resources: Session Recording | Session Summary (PDF)
Session 2: Achieving Early Diagnosis
Presenters: Dr Emma Weisz, a paediatrician and Senior Project Clinician at Melbourne Genomics Health Alliance, and Erin Crellin, PhD candidate at Melbourne Genomics Health Alliance, University of Melbourne and Murdoch Children’s Research Institute
Resources: Session Recording | Session Summary (PDF)
Session 3: Innovative Clinical Trials Access Models
Presenter: Professor David Coman, a clinical geneticist, metabolic physician and consultant paediatrician
Resources: Session Recording | Session Summary (PDF)
Session 4: Clinical Yarning
Presenter: Dr Yarlalu Thomas, a Nyangumarta Pitjikarli man, medical doctor and co-founder of Lyfe Languages
Resources: Session Recording | Session Summary (PDF)
Please send any queries you have to: [email protected]
