DiS - Rare is a study that aims at generating insights into digital health solutions for patients with neuromuscular diseases (NMDs). Your participation in this study will help to create digital solutions that are patient and provider friendly. The first part of the study [...]
Friday 7th October, Join Dr Winnie Tan, recipient of Research Grant from CMT Australia and hear of the research these funds are assiting, ask questions and take a guided tour of the Lab. This event is available to 20 visitiors on site, and will [...]
Do you/your child wear ankle-foot orthoses and are you based in Sydney? If yes, the team at The Children’s Hospital at Westmead would love to hear from you ASAP! You can take an active role in designing better AFOs for children. They are looking [...]
The University of Sydney is currently conducting a study to identify current physical activity levels and barrier to exercise in people with Charcot-Marie-Tooth disease (CMT). The study aims to make a valuable contribution to the development of exercise programs in the CMT Community. Have [...]
The University of Sydney is currently conducting a study to assess the exercise habits and potential barriers to exercise participation in people with Charcot-Marie-Tooth disease. This study aims to make a valuable contribution to the development and implementation of exercise interventions in the CMT [...]
Professor Marina Kennerson and her enthusiastic team hosted their second 'Celebrating Microscopes Together (CMT)' Open Day in Feb 2020 where patients and their families could see their ground-breaking research in an informative relaxed setting. Here's a video of what we got up to. [...]
Following on from our informative National Zoom Coffee and Chat, here is your opportunity help our leading researchers to help you and our "CMT family". Are you interested to participate in our research? Do you have CMT that is genetically [...]
Volunteers for Sydney University As we are aware, many Allied Health Professionals have had very little experience in treating people with CMT. There is an opportunity for people with CMT to assist final year Exercise Physiology students to gain a better understanding of CMT. Background [...]
Did you know that 40% of those who have been diagnosed with CMT don’t know what specific CMT gene they have? Professor Marina Kennerson PhD, from our own world leading ANZAC Research Institute, will be giving an informative and encouraging presentation regarding a major [...]
The Sord Deficiency Webinar recording, from Hereditary Neuropathy Foundation in America, would be highly relevant for patients with a positive SORD mutation genetic test. This mutation is only reported in families with recessive inheritance. The therapies in the webinar would [...]
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