Patient Resources

fara Australia organises a number of patient-related information and support services throughout the year, including face-to-face or virtual Patient Forums, quarterly Zoom FA Community catch-ups, and a private chat group for FA patients and family on Facebook. Please contact us at info@fara.org.au for further information, and click here to download an FA Patient Resource list.

  • FRIEDREICH ATAXIA CLINIC MELBOURNE
    Monash Medical Centre
    4th and 5th Tuesday each month (except December)

    FRIEDREICH ATAXIA CLINIC BRISBANE Contact: Lily Tang, Clinical Nurse Coordinator Phone: 07 3646 7103 faclinic@health.qld.gov.au

    Multidisciplinary care: Neurology, Cardiology, Allied Health (OT, Physiotherapy, Speech Pathology, Social Work) Contact: Ass/Prof. Louise Corben Phone: 03 8341 6228 louisecorben@ghsv.org.au

  • FRIEDREICH ATAXIA ASSOCIATION OF VICTORIA faav.com.au

    FRIEDREICH ATAXIA NETWORK QUEENSLAND fan.asn.au

  • CONNECT FA is an educational and support resource dedicated to the FA community

  • The FA App has been designed to connect and empower individuals with FA, worldwide. Available to download in the App store or on Google Play.

  • Consensus Clinical Management Guidelines for Friedreich’s ataxia
    Guidelines for clinicians, patients and research to ensure better outcomes today, and in the future.

  • fara Australia recently held its annual FA Patient Information Forum in Melbourne. For those who couldn't attend, you can watch the webinar recording by clicking here.

    You'll need to enter Passcode: yB!fCJ2p

  • The Loop is a resource hub built for the neuromuscular community by the Muscular Dystrophy Foundation Australia. It includes information and guides on how to manage health and wellness for neuromuscular conditions, including Friedreich Ataxia. Click here to view.

GENE THERAPY EDUCATION MODULES

In preparation for potential clinical trials for gene therapy in 2022, FARA US has developed educational modules to assist the FA community with this approach to treatment.

There are complex issues to consider that are different from the issues in traditional investigational drug trials. Each module is self-paced and includes check-in exercises or worksheets to confirm your understanding and to allow you to keep this information for future reference.

Information on clinical trials and gene therapy education can be accessed via FARA US at www.curefa.org, or by clicking here.

Minutes of Science are a number of short videos that have been released by FARA US - the result of a collaborative effort of members of the FA community; researchers, FARA staff and individuals living with FA.

They hope the videos will be a fun and approachable way of understanding the science of FA, and the research that you help to make possible.

The videos present exciting research advances, highlighting the essential roles of raising funds, awareness, and participating in research studies, to reach our ultimate goal of curing Friedreich Ataxia.

Click here to view the Minutes of Science videos or visit www.curefa.org.

MINUTES OF SILENCE

CARE GIVERS OF CHILDREN WITH RARE DISEASES

"Many caregivers may say that caring for a child with a rare and/or serious illness feels like riding a rollercoaster with highs and lows."

The National Alliance for Caregiving in partnership with Global Genes have released a free online guidebook for parents and carers of children living with a rare disease or serious illness.

The Guide addresses the many ups and downs of caring for a child with an advanced illness and medical complexities and offers resources, personal stories, and evidence-based insight to the care journey.

Although written with the US market in mind, the Guide does provide some practical solutions and insights to everyday care situations.

To download a pdf copy click here or go to www.caregiving.org.

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