2. Introduction
HCU Network Australia is a not for profit established in 2014 with the vision
“to be a driving force in the journey to a cure, improving quality of life along the way”
Our aim is to improve individual outcomes through education, research and support.

3. Meet our team
HCU Australia Board Members: Tara Morrison, Director and Chair Paula Clark, Director Ranisha Clarke, Director Kristin Bell, Director Sue Ballesty, Director

4. Key areas of focus
Connect and support people impacted by Homocystinuria
Improve the diagnosis path to enable appropriate treatment
Provide education and information to people impacted by Homocystinuria
Encourage and support clinical research, research for novel therapies and ultimately a cure
Raise funds to achieve our objectives 

5. Providing support by in-person and virtual events and online communities
International Patient – Expert Meetings held in different locations bi-annually
Online Patient Forum to foster discussion and information sharing
Contact Register to build stakeholder engagement
Facebook page keeps stakeholders updated with latest information
Future:
Virtual patient meetings to provide peer support and reduce isolation up to 10 persons
3rd International Patient - Expert Meeting 2018

6. Providing support and knowledge of available resources
Diagnosis Packs for newly diagnosed individuals
Smartphone App for dietary management
Infographics to bring awareness and provide information 
Interactive Disease Checklist to reduce barriers to accurate diagnosis
Video patient testimonials and online patient stories to enhance the community
Future:
CBS deficiency Patient Guidelines
Topic specific Factsheets

7. AccuGo App for dietary management for HCU contains the following features:
Protein and methionine mode of tracking
Overview of day’s running total of protein/methionine at a glance
Historical graph showing totals over the past month
Automatic calculation of protein/methionine
Includes preloaded and searchable USDA based food items
Add own foods and values to the database
Community food list
daily food records by date range including a summary of average over the date range

8. Educating persons impacted by Homocystinuria
Repository of Meeting Reports, Presentation Slides and Video Recordings to build resources for the community
Interactive Disease Checklist to reduce barriers to accurate diagnosis
Q & A Interviews with leading experts to inform on topics of interest
Webinars with leading experts on topics of interest 
Guidelines for the diagnosis and management of cystathionine beta-synthase deficiency: J Inherit Metab Dis (2017) 40:49–74
eNews to inform stakeholders of latest developments in the community
Future:
Webinar: “What we know. What we don’t know.
Live Q & A
Reduce Barriers to diagnosis: targeted education

9. Awareness is key to detection
Focus on reducing barriers preventing accurate diagnosis and clinical treatment:
Educate about recognising early signs of HCU
Educational materials to bring awareness to symptoms such as abnormal height, myopia, development delays, etc.
Educate to dispel misconceptions on test efficacy: <100% accuracy
Dedicated speaker at medical conference Royal Australian College of Physicians upcoming conferences
Published medical journal article to bring attention to diagnostic delays

10. Encourage and support research in the field:
In collaboration with HCU Network America -
International Scientific Advisory Board to advise on strategy and key research priorities  
Research Map to inform all stakeholders about clinical and preclinical stage technologies in development for treatment
Research Strategy to illustrate overall principles and criteria for prioritisation of the research focus
Future:
Collaborate with leading expert to develop and publish patient survey on diagnostic delay and treatment options
Fundraising for research grants

11. For more information
Visit HCUNetworkAustralia.org.au Subscribe to our eNews and Contact Register Follow us on Watch us on HCU Network Australia is registered with the Australian Taxation Office as a Health Promotion Charity. We are endorsed as a Deductible Gift Recipient (DGR)..

12. Thank you
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