While there’s neither treatment nor cure currently for FA, it’s important for FA patients to maintain contact with a range of specialists who understand FA, can monitor their progression and give advice on different aspects of the condition.
The Friedreich Ataxia clinic is based at RBWH. Establishing and obtaining government support for the clinic was a huge effort and is largely due to the efforts of Dr Kate Sinclair and Mike Dwyer who campaigned heavily to make the clinic a reality.
A number of clinics are run each year and they enable bulk-billed patient visits (zero out of pocket costs to Australian Medicare card holders) with up to 10 specialists in the one clinic, and ensure those specialists get to confer and exchange relevant observations to accelerate and deepen everyone’s understanding. The invaluable information collected from patients has enabled important research developments into all areas of Friedreich Ataxia.
Brisbane followed from the ongoing success of a similar clinic in Melbourne which has been running since 2001, the first dedicated FA clinic in the world.
Both clinics provide a range of services, including access to a neurologist, geneticist, occupational therapist, physiotherapist. speech pathologist, echocardiographer, and referrals to related specialist services such as cardiology, rehabilitation, ophthalmology, urology, respiratory and orthopaedics.
To make an appointment to the Brisbane clinic:
Lily Tang, Clinical Nurse Coordinator, FA Clinic, Royal Brisbane and Women’s Hospital
To make an appointment to the Melbourne clinic:
Co-ordinator, FA Clinic
03 8341 6228
Besides promoting the best possible quality of life, the clinic is vital in establishing a database of patient records, thus creating potential for drug trials to use Brisbane or Melbourne as their patient base. The Melbourne FA clinic is part of CCRN (Collaborative Clinical Research Network)
Brisbane Clinic 2017 dates
Clinics will run on the following dates in 2017:
- 16th & 17th February
- 25th & 26th May
- 20th & 21st July
- 24th & 25th August
- 14th & 15th September
- 19th & 20th October
- 16th & 17th November
Places in each clinic are limited and it requires careful planning to synchronise a number of patients seeing different specialists, so if you’d like to be added to the Clinic, please get in touch with Lily (details above) and organise a referral as soon as possible.
Lily’s schedule for the full calendar year is already prepared but it’s hospital policy that she should reconfirm appointments with each specialist before locking in each clinic and then confirm bookings with patients six weeks in advance. If you attended clinic before, you’re likely scheduled for about the same dates this year (March 2016 moved to February 2017, April 2016 moved back to May 2017).