Expert presentation
The webinar begins with a presentation from an expert on a specific topic relevant to rare disease health care.
Clinical Community of Learning Practice
Learn together. Share expertise. Strengthen rare disease care.
Rare Disease Project ECHO® is a Clinical Community of Learning Practice that connects health professionals with a multidisciplinary team with expertise in rare disease through interactive online learning and discussion.
How it works
Rare Disease Project ECHO® is a Clinical Community of Learning Practice and continuing professional development activity delivered through interactive webinars. It connects health providers with a multidisciplinary team with expertise in rare disease.
A community of learning
Rare Disease Project ECHO® is designed as an interactive learning experience. Rather than knowledge flowing in only one direction, participants are encouraged to contribute to discussion and learn from the multidisciplinary team and from each other.
This creates an opportunity for health professionals from different disciplines and settings to connect around the shared challenges of providing high-quality care to people living with rare disease.
During each webinar
Each webinar combines expert input with reflective discussion and participation from the Project ECHO® community.
The webinar begins with a presentation from an expert on a specific topic relevant to rare disease health care.
The presentation is followed by reflective discussion, allowing the topic to be explored through different clinical and professional perspectives.
All participants are encouraged to join the discussion, share perspectives and contribute to the learning community.
Why participate?
Rare Disease Project ECHO® brings health professionals into a multidisciplinary learning community, creating opportunities to strengthen rare disease knowledge and connect with expertise, resources and other providers.
Connect
Build awareness of pathways to rare disease subject-matter experts and the expertise available to support people living with rare conditions.
Learn
Learn from multidisciplinary expertise and discussion that can support approaches to the diagnosis and management of people living with rare disease.
Discover
Discover resources that can support health professionals in practice and provide useful information for people living with rare disease and their families.
Collaborate
Connect with a network of health professionals from different disciplines and settings who share an interest in improving rare disease care.
Practical learning
Project ECHO® creates a space where health professionals can hear from people with relevant expertise, explore rare disease topics with colleagues and identify information, resources and connections that may be useful in practice.
Multidisciplinary by design
Rare Disease Project ECHO® brings health professionals together across disciplines, creating opportunities to learn from different perspectives and build connections beyond individual specialties or services.
Continuing professional development
Rare Disease Project ECHO® provides continuing professional development opportunities for health professionals, including general practitioners.
Watch Project ECHO®
Watch recorded Rare Disease Project ECHO® presentations and explore the accompanying session summaries to revisit key topics, practical insights and resources from the learning series.
The session summary is available now. The recording will be added when it becomes available.
Previous series & partners
Explore earlier Rare Disease Project ECHO® series, including session recordings and practical summaries covering topics across diagnosis, communication, mental health, care coordination, research and innovative approaches to rare disease care.
Series 3 explored mental health and wellbeing, achieving earlier diagnosis, innovative clinical trials access models and Clinical Yarning.
Presenter: Louise Healy, Education and Advocacy Manager, Rare Voices Australia
Presenters: Dr Emma Weisz, 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
Presenter: Professor David Coman, clinical geneticist, metabolic physician and consultant paediatrician
Presenter: Dr Yarlalu Thomas, a Nyangumarta Pitjikarli man, medical doctor and co-founder of Lyfe Languages
Series 2 explored practical approaches to supporting people and families across diagnosis, communication, family support, care coordination and innovative rare disease prevention and care.
Presenters: Michele Hemmings, Patient Pathways Telehealth Nurse, and Clare Stuart, Policy and Advocacy Manager, RVA Partner Mito Foundation
Presenter: Dr Manjekah Dunn, Junior Doctor, Sydney Children’s Hospitals Network and researcher in the GeneEQUAL team
Presenter: Rebecca Saad, nurse consultant at Sydney Children’s Hospitals Network
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
Presenter: Libby Massey, Director, Research, Clinical Services and Education at MJD Foundation
The first Rare Disease Project ECHO® series explored foundational topics across lived experience, mental health, communication, diagnosis, genomics, whole-of-life care, patient advocacy and rare disease research.
Presenter: Nicole Millis, Chief Executive Officer, Rare Voices Australia
Presenter: Louise Healy, Education and Advocacy Manager, Rare Voices Australia
Presenter: Stephanie Broley, Genetic Counsellor, Rare Care Centre, Perth Children’s Hospital
Presenters: Professor Gareth Baynam, Clinical Geneticist, Rare Care Centre, Perth Children’s Hospital, and Dr Emma Palmer, Clinical Geneticist, Sydney Children’s Hospital
Presenter: Dr Emma Palmer, Clinical Geneticist, Sydney Children’s Hospitals Network
Presenter: Rare Care Centre, Perth Children’s Hospital
Presenter: Louise Healy, Education and Advocacy Manager, Rare Voices Australia
Presenter: Dr Falak Helwani, Research and Evaluation Manager, Rare Voices Australia
Collaboration
Rare Disease Project ECHO® has been supported through collaboration across organisations with expertise in rare disease, clinical care, education and lived experience.
Rare Diseases NSW brings together lived experience, clinical, research and health-system expertise to improve outcomes for people living with rare and undiagnosed conditions.
Learn moreRare Voices Australia is Australia’s national peak body for people living with a rare disease and has contributed rare disease and lived experience expertise across Project ECHO®.
Visit Rare Voices AustraliaThe Rare Care Centre at Perth Children’s Hospital brings multidisciplinary rare disease expertise and experience supporting children, young people and families navigating rare and undiagnosed conditions.
Visit the Rare Care Centre