A diagnosis of a rare disease can change a family’s life. Our HCU Blue Bag seek to provide practical support to alleviate some of the emotional stress and isolation experienced by the individual and their families at the time of diagnosis.
We invite you to take a virtual look inside our Blue Bag. It is a toolkit full of resources for newly diagnosed individuals and their families. Email us if you haven’t received your Blue Bag at your Australian metabolic clinic.
|Download or print HCU Network Australia Flyer
A snapshot about HCU Network Australia aims, objectives and available resources.
|Download or print HCU Disease Checklist – Homocystinuria: A treatable disorder
A comprehensive list of the key warning signs and symptoms of classical homocystinuria. This could help you speak with your doctor about your symptoms. Take the interactive Checklist along to your next appointment.
|Download or print Patient CBS deficiency Guidelines Coming Soon!
The Patient Guidelines are to help you get the best HCU treatment. The information in the Patient Guidelines is based on the Guidelines for the diagnosis and management of cystathionine beta-synthase deficiency published in the Journal of Inherited Metabolic Disease (JIMD).
|Download or print AccuGo for HCU Brochure
AccuGo is a smartphone App designed to ease the day to day management of the low protein diet and is a service provided by HCU Network Australia.
|Check your contact information is up to date on our Contact Registry and download or print our Contact Register Postcard
Correct contact details mean you will be kept updated of the latest news and events.
|HCU Network Australia portfolio.
A portfolio to collate medical letters, reports and results. Tabs include blood results, reports, metabolic correspondence, specialist correspondence and notes.
|Hugo the Rare Rhino.
Hugo is our branded soft plush white rare rhino. For the younger patients when cuddles are needed.
|Join our Patient Forum, watch Patient Testimonials and read Patient Stories.
Submit your patient story here
|Visit our HCU Network Australia Youtube Channel for Meeting presentations and expert Q & A
Subscribe to our Youtube Channel to be alerted when new video resources become available.
|Watch expert Webinars on topics of interest
Past Webinar recordings are available to view here.
|Check out Meeting Resources from past International Patient – Expert Meetings
If you are unable to attend our conferences in person you can view some of the presentation slides here.
|Fact Sheets & Infographics
View our animated infographic here.
An overview of diagnosis, symptoms and treatment. Download or print PDF here.
An overview of clinical and preclinical stage technologies in development for HCU. Download or print PDF here.
An overview of our 3 key focus areas. Download or print PDF here.
Email us if you need a hand with anything.
We are always willing to help!
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