Thank you to everyone who contributed to our healthcare workshop last week - the parents, clinicians, researchers, government representatives and care providers. We'll be sharing our plan moving forward very soon.
Key recommendations from the Prader-Willi syndrome healthcare workshop:
- Good healthcare for Australians with Prader-Willi syndrome relies on fostering deep expertise locally.
- Healthcare providers (GPs, hospitals and allied health) need professional support and resources to incorporate the specifics of Prader-Willi syndrome into their management.
- In Australia, technology can play a critical role to improving access to Prader-Willi syndrome expertise. This can have a real impact on improving diagnosis, treatment and management.
- Research is a critically important component of improving healthcare for those living with Prader-Willi syndrome.