Information & Support

Patient Pathways Program

Genetic Undiagnosed and Rare Disease Patient Pathways Nurse (National Program)

This is a free, confidential information and support service which provides information and links to practical support. You can book a time to talk with her by completing the online booking form https://www.gsnv.org.au/patient-pathways-program/ or call 1300 75 50 50.

The Patient Pathways nurse can help you with any questions and/or concerns you may have including: • emotional support if you or someone you care about has a genetic, undiagnosed or rare disease • how to manage life with a genetic, undiagnosed or rare disease • questions you may have about your, or the person you care for genetic, undiagnosed or rare disease • how to find other organisations and resources that can help you or your family’s life with a genetic or rare condition • Help on guiding you through the healthcare system to access all the relevant services. Your personal and health information will remain confidential. Please note the Patient Pathways Nurse is only available to people living in Australia.

 

Telehealth WA

Dr Phillipa Lamont

Head of Neurogenetics Unit, Royal Perth Hospital, Perth WA

https://gardn.org.au/health_professionals/dr-phillipa-lamont/

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