Research
Research into FA is ongoing globally. Many New Zealanders with FA have participated in the Friedreich Ataxia Clinical Research Program led by Professor Martin Delatycki in Melbourne, Australia and, more recently, through the Neurogenetic Research Clinic at the University of Auckland. These programs include research on neurological function, cardiac health, gait, speech, vision, hearing, quality of life, and sexual function in individuals with FA.
The Friedreich Ataxia Clinics are part of the UNIFAI study, a global observational natural history study used to understand the disease progression and support the development of safe and effective drugs and biological products for Friedreich ataxia.
Friedreich's ataxia (FA) was first described in 1863 by German physician Nikolaus Friedreich
Partnership with Australia
FARA NZ works closely with our larger Australian counterparts, fara Australia. The Australian organisation helps FARA NZ with our research goals and opportunities, and the way we operate for New Zealanders with FA.
Research Pipeline
The Friedreich’s Ataxia Treatment Pipeline is a visual tool for communicating the progress of research and development on lead therapeutic candidates.
New Zealand Patient Registry
The NZ Neuromuscular Disease Registry helps connect people living with FA to clinical trials and other research opportunities.
If you are interested in registering, please email the curator on nznmdregistry@adhb.govt.nz for more information.
Friedreich Ataxia Clinical Management Guidelines
The full research paper for the Clinical Management Guidelines can be found here. View the guidelines and the user guide using the dropdowns below.
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Committed international physicians and researchers have critically evaluated medical literature, outcomes research and clinical practice for treating symptoms of FA, and have come together to prepare the first comprehensive Clinical Management Guidelines
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This User's Guide provides instructions on how best to utilise the full guidelines.
Scientific News
The latest news on Friedreich’s Ataxia compiled by FARA