Diagnosis4All
About Diagnosis4All
Diagnosis4All is a research program working to improve equitable, timely, and culturally safe access to genomic (genetic) diagnoses for priority populations in New South Wales.
Genomic diagnoses are increasingly helping people with rare and complex conditions to access personalised and targeted care. However, access to genomic health services is not equal. Some communities are far less likely to receive a diagnosis, even when they have the same health needs as others. D4A exists to understand why these gaps exist and to work alongside communities to close them.
Diagnosis4All is led by Associate Professor Emma Palmer at UNSW Sydney and is funded by the Australian Government Medical Research Future Fund (MRFF) Genomics Health Futures Mission.
Who we are working with
Diagnosis4All is working with communities that are currently underserved in genomic diagnosis and care.
Everything we do is designed with these communities, not for them:
- First Nations peoples, in metropolitan and rural and remote NSW
- Culturally and linguistically diverse communities, with a focus on Arabic and Vietnamese speaking communities
- People living in regional and remote areas of NSW
What we are doing
Our research has two connected parts:
Stream 1 – Listening & Learning
We work with people with lived experience, communities, healthcare professionals, and health services to understand what helps – and what gets in the way – of accessing genomic diagnosis.
This involves workshops, community consultations, and interviews, designed and delivered with cultural safety at the centre.
Together, this work will help create a Genomic Equity Framework.
This framework will provide practical recommendations for change across the NSW health system.
Stream 2 – Community of Practice
Diagnosis4All is creating a free online Community of Practice for healthcare professionals across NSW.
This monthly learning community brings together professionals who are not genomic specialists but who support people with rare or undiagnosed conditions in their practice.
The Community of Practice builds knowledge and confidence in culturally safe genomic care and links health professionals with genomic services and undiagnosed disease pathways.
Our goals
Through Diagnosis4All we aim to:
- Understand what helps and what hinders equitable access to genomic diagnoses
- Co-design a Genomic Equity Framework with practical recommendations for health system change
- Support healthcare professionals to deliver culturally safe genomic care
- Strengthen our partnerships with communities, healthcare professionals, health services, and researchers
- Share learnings to improve genomics policy and practice in NSW and Australia
What organisations are involved
Diagnosis4All brings together a team clinicians, researchers, implementation scientists, consumer advocates, and community partners from across Australia.
Research
- UNSW Sydney (lead organisation)
- University of Sydney
- Garvan Institute of Medical Research
- Centre for Population Genomics
- Murdoch Children’s Research Institute
- Luminesce Alliance
Health Service
- Sydney Children’s Hospitals Network
- South Western Sydney Local Health District
- Western NSW Local Health District
- NSW Health
Consumer & Community
- Genetic Alliance Australia
- Rare Voices Australia
Governance
Diagnosis4All is guided by people with lived experience, researchers, healthcare professionals, and community representatives.
Our governance includes an Advisory Committee, a Lived Experience Group, and a Community of Practice.
How you can get involved
We would love to hear from people and organisations who would like to be part of Diagnosis 4 All.
There are several ways to be involved with some places limited.
Lived Experience Group
If you have lived experience of a rare or undiagnosed condition, or you care for someone who does, you can express your interest in joining our Lived Experience Advisory Group. Members help shape and guide the research, working alongside our team to make genomic health services fairer and more culturally safe.
Expression of Interest form | Places are limited
Community of Practice
Healthcare professionals across NSW who support people with rare or undiagnosed conditions are warmly invited to register their interest in joining our Community of Practice.
To register your interest please email us at Diagnosis4All@unsw.edu.au
Contact Us
To find out more about Diagnosis4All, or to discuss how you or your organisation can be involved, please send us an email.