Rare Disease Project ECHO®

The Rare Disease Awareness, Education, Support and Training (RArEST) Project team is using the Project ECHO® model to create a community of clinical learning practice to increase awareness of rare diseases and provide health professionals with multidisciplinary peer learning and evidence-based, clinically informed expert support to deliver contemporary best practice health care nationally.

The RArEST Project is a collaboration between Rare Voices Australia (RVA), the University of New South Wales, the University of Western Australia and Macquarie University. Learn more about the RArEST Project.

Project ECHO® is a free, innovative video conferencing ‘hub-and-spoke’ outreach model that connects community providers or practices (‘spokes’) to the multidisciplinary RArEST team (‘hub’). It is designed to address the needs of vulnerable populations by equipping communities and clinics with the right knowledge, at the right place, and the right time.

See the session schedule and access the meeting recordings and resources.

How participating in Rare Disease Project ECHO® benefits your practice:

  • Clinical care: support with diagnosis and management of rare diseases in your practice. Examples of rare diseases include genetic conditions such as cystic fibrosis and Noonan syndrome, and rare autoimmune and oncological conditions such as systemic lupus erythematosus (SLE) and Mesothelioma.
  • Knowledge: learn about the resources available to you and your patients across a range of topics, including rare disease research, mental health and wellbeing, and integrated care.

How your practice community benefits from your participation in Rare Disease Project ECHO®:

  • Health: create and engage with a multidisciplinary network of like-minded care providers to support patients living with a rare disease and their carers/families.
  • Access: establish referral pathways across Australia to reach subject matter experts for rare diseases. Gain access to a range of rare disease focused resources and training designed for health professionals

Time commitment and cost:

There are no costs involved with you continuing your professional education with Rare Disease Project ECHO®. See the full schedule below. All sessions are delivered online via Zoom.

Continuing professional development (CPD) points

Many health professionals can use these sessions towards self-identified continuing professional development requirements. For example, general practitioners can log Rare Disease ECHO® sessions via the RACGP ‘myCPD dashboard’ (each 1-hour session = 2 CPD points).

How to join Rare Disease Project ECHO®

Register to attend the series.

Please email the RArEST Project team with any queries you may have about Project ECHO® or the RArEST Project: RArEST@unsw.edu.au

2022/23 Schedule for Rare Disease Project ECHO®*

Session 1: Rare Disease Facts and Figures and the Importance of Lived Experience
Date: Wednesday 5th October
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

Date: Wednesday 2nd November
Presenter: Louise Healy, Education and Advocacy Manager, RVA
Resources: Session Recording | Session Summary (PDF)

Session 3: Communication About Rare Diseases

Date: Wednesday 14th December
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

Date: Wednesday 25th January
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

Date: Wednesday 8th March
Time: See below
Presenter: Dr Emma Palmer, Clinical Geneticist, Sydney Children’s Hospitals Network

Session 6: Whole of Life Care

Date: Wednesday 19th April
Time: See below
Presenter: Rare Care Centre, Perth Children’s Hospital

Session 7: Partnering with Patient Advocacy Groups

Date: Wednesday 31st May 2023
Time: See below
Presenter: Louise Healy, Education and Advocacy Manager, RVA

Session 8: Rare Disease Research

Date: Wednesday 12th July 2023
Time: See below
Presenter: Dr Falak Helwani, Research and Evaluation Manager, RVA

*Please note the above schedule is subject to change.

See the below table for dates and times per state

314th December 20225.30-6.30pm8.00-9.00pm7.00-8.00pm7.30-8.30pm8.30-9.30pm
425th January 20235.30-6.30pm8.00-9.00pm7.00-8.00pm7.30-8.30pm8.30-9.30pm
58th March 20235.30-6.30pm8.00-9.00pm7.00-8.00pm7.30-8.30pm8.30-9.30pm
619th April 20235.30-6.30pm7.00-8.00pm7.00-8.00pm7.30-8.30pm7.30-8.30pm
731st May 20235.30-6.30pm7.00-8.00pm7.00-8.00pm7.30-8.30pm7.30-8.30pm
812th July 20235.30-6.30pm7.00-8.00pm7.00-8.00pm7.30-8.30pm7.30-8.30pm