National Survey of Health Services for Children Living with Rare Diseases


In Australia we have no comprehensive list of rare disease clinics and services that are available for people living with a rare disease and for clinicians who need to refer patients to these services. Internationally, there are well established lists including ORPHANET in Europe and NORD in America.

Australia is now a partner of the ORPHANET global consortium and we aim to facilitate a list of services on the ORPHANET Australia site (if permission is given by the service).

The information collected  from this survey will also help us to describe rare disease health services in Australia in terms of scope, workload, geographical distribution and resourcing. We hope to be able to use the information collected from this survey to advocate for improved service resourcing.

If you would like to participate in this survey or would like more information please contact Dr Marie Deverell on  9845 2200 or email (

This survey is proudly supported by the SMILE Foundation, Office of Population Health Genomics, WA Health; and the Australian Paediatric Surveillance Unit. The section on transition services is supported by The Department of Health and Ageing.