Fabry Australia | Non-profit organisation

Fabry Australia

Phone: +61 412 462 732

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• Non-profit organisation
• Non-governmental organisation (NGO)

23.01.2022 Today is the first day of Fabry Awareness Month. To create greater awareness, why not change your profile picture for the month of April and include the Fabry Australia logo? Don't forget to tell your friends why you've changed your profile picture. https://bit.ly/3qYGPXJ #FabryAwarenessMonth

22.01.2022 It is common for Fabry disease patients to complain about being heat intolerant. Because of this, summers can be challenging. One study reported by Fabry Disease News noted that nerve cell loss in sweat glands may contribute to sweating issues in Fabry patients. With summer upon us, this article may provide some ideas on how to beat the summer heat.... Source | Fabry Disease News

20.01.2022 Hats off to all those battling with rare diseases. We do not underestimate the challenges you face in finding and accessing the support you need. However, we do not wish to remain in the undiagnosed camp, and very much hope that one day we will join your ranks.

20.01.2022 Did you miss our recent Fabry Australia eNews? Use the link below to catch up, and send us an email so we can add you to our mailing list. [email protected] #FabryDisease

17.01.2022 The average length of time from symptom onset of a rare disease to an accurate diagnosis is nearly five years. Along the diagnostic journey, a person may see around seven different medical specialists before a receiving a diagnosis. Genetic testing, in a variety of forms, is one way to identify rare genetic diseases, which can determine if a person has a disease caused by a change (mutation) in a gene. Read more via American Society of Gene & Cell Therapy

15.01.2022 Fabry disease is part of my life day after day, but it does not define me! #FabryAustralia

15.01.2022 Ask me about Fabry disease. #FabryAwarenessMonth

13.01.2022 This morning AVROBIO held a webcast where the company announced: AVR-RD-01 for Fabry disease: Potential accelerated approval strategy planning underway as clinical data across Phase 1 and Phase 2 trials continue to show positive and durable clinical activity and safety data. 42 month data for the phase 1 Fabry program The press release summarizes the updates from today.

10.01.2022 See below exclusive story running in the Daily Telegraph today. Fabry Australia’s Managing Director Megan Fookes was quoted and referenced. The Story focusses on broader issues of medicine access including clinical trials in Australia and has referenced a number of company submissions to the Inquiry into approval processes for new drugs and novel medical technologies in Australia. Source; Sydney Daily Telegraph

09.01.2022 There are a range of measures people with existing mental health conditions can put in place to support their health and wellbeing through the COVID-19 pandemic. This article, via Beyond Blue looks at the importance of trying to manage uncertainty. #COVID19 #FabryDisease

08.01.2022 The Mission for Fabry Australia is to Unite and Support the Australian Fabry Community. Our website has several links that may be helpful for those living with Fabry disease. https://www.fabry.com.au/resources-links

07.01.2022 Some days are more of a struggle than other days, but when the energy and power returns - we are unstoppable!

07.01.2022 You might have heard that wholegrains are part of a healthy diet, but what are they? And why are they essential to your health? This article via Heart Foundation covers all you need to know about wholegrains to put you on the right track.

06.01.2022 This article, via The Mighty, talks about how invisible illnesses are often discredited or not seen as serious by the general public.

05.01.2022 We've shared this article previously, but feel it's worth a re-post! It can be very stressful and dispiriting to live with a rare chronic disorder such as Fabry disease, which leads to symptoms ranging from kidney and heart disease to eye and stomach problems. One way to help cope is through a practice called mindfulness. Source | Fabry Disease News

03.01.2022 A Japanese concept called shoshin might help people with diseases such as Fabry disease change their perspective and see their world, and their disorder, in a different light. Read more via Fabry Disease News.

03.01.2022 If Kidney disease impacts your health, you may find the Kidney Health Australia resource website helpful. When downloading a resource, for the first time, you will be asked to enter your email address. After that you will be able to download as many resources as you like. #KidneyDisease #FabryDisease

01.01.2022 We are pleased to offer a private space for those living with Fabry Disease to discuss treatment, diagnosis, symptoms and more. If you live with Fabry Disease and have wanted to ask questions about your condition privately without judgement, join our private group. Click through, you may find some else has asked your question already! #FabryDisease