The public consultation on the refresh for the National Strategic Framework for Chronic Conditions (the Framework) closes at 3 pm (AEST), Monday 29 April 2024. The Department are encouraging stakeholders to provide their submissions to ensure stakeholder feedback is included in shaping the refreshed Framework. Ipsos Consulting is conducting a short survey where individuals managing health conditions can express their viewpoints on healthcare. The survey takes just 3-5 minutes. As a thank you, they will have a chance to win a $500 online gift card and opt-in for future healthca ..read more

Seeking participants in Victoria for an important study. Who can participate? We are looking for people with scleroderma and without any history of heart disease to look closely at heart health. What are we asking? We are looking to compare the rhythm and function of the heart in people without Scleroderma to those who have Scleroderma. What is involved? 3-4 study visits over 12 months Heart ultrasound (echocardiogram) Cardiac magnetic resonance imaging (MRI) 48-hour heart rhythm monitor (Holter Monitor) Cardiopulmonary exercise test (scientific fitness testing) Blood tests   Why you ..read more

The Pathways Telehealth Nurse service is an Australian innovation that places a trained registered nurse within a patient organisation, to provide specialist care and health system navigation to communities with rare, genetic, and complex conditions. The program was developed by an Australian nurse, Kate Holliday who is a researcher, Chief Executive and founder of the Centre for Community-Driven Research. The concept of the Pathways Telehealth Nurse program comes from leveraging the relationship patient groups have with the community, and if they have patients coming to them, we need to make ..read more

Welcome to the Western Sydney Support Group Meeting.  Come along for support, friendship and information – everyone is welcome.  Date: May 18, 2024 Time: 10.30 am  Location: The Cafe, Blacktown Workers Club, Campbell Street, Blacktown. Contact: Marilyn 0414 390 449 or sclerodermansw@tpg.com.au More Information The post Scleroderma NSW – Western Sydney Support Group (May 18, 2024) appeared first on Scleroderma Australia ..read more

Come along to the Hobart Support Group Meeting. Everyone is welcome to come along for support, friendship and information.  Date: April 24, 2024 Time: 9.45 am Location: The State Cinema, Hobart TAS 7018 Email: supportgroups@sclerodermavictoria.com.au Contact Us The post Scleroderma Tasmania – Hobart Support Group (April 24, 2024) appeared first on Scleroderma Australia ..read more

Lung Foundation Australia is proud to be partnering with Scleroderma Australia to provide an online community for men living with Scleroderma, or caring for someone who is. This is a space to listen to each other’s experiences without judgment, share stories, resources, questions and tips, and to encourage each other to manage this condition. To join this welcoming and private community, express your interest via the QR code on our Flyer below and we’ll be in touch. These are held on the second Monday of each month from 7.30 pm AEDT. Email: hello@sclerodermaaustralia.com.au FLYER The ..read more

Welcome to the Sydney Support Group Meeting.  Come along for support, friendship and information – everyone is welcome.  Date: May 25th, 2024 Time: 12.00 noon Location: Eternity Cafe  827 – 839 George Street, Sydney. (Opposite the Concourse Central Station). Contact: Marilyn 0414 390 449 or sclerodermansw@tpg.com.au More Information The post Scleroderma NSW – Sydney Support Group (May 25, 2024) appeared first on Scleroderma Australia ..read more

The Inner South Eastern Social Support Group are looking forward to getting together again and can’t wait for some great conversations and sharing our support to one another other.  Date: May 14, 2024 Time: 12 noon  Location: Lazy Moes – 90-94 Warrigal Rd, Oakleigh 3166 Lazy Moes is about 5 minutes walk from Oakleigh Station and many buses. They cater for many dining requirements. You can just have a cup of coffee, a piece of cake, gelati, a pizza, pasta or what ever else might take your fancy. The best thing about it is they have there own car park. You can enter it from Warragul ..read more

Come along to the  Gold Coast Support Group Meeting. Everyone is welcome to come along for support, friendship and information. Stay and enjoy lunch following the meeting. Date: April 8th, 2024 Time: 10:00 am  Location: Burleigh Sports Club, 111 Christine Ave, Burleigh Waters Phone:  0468 801 021 Email: info@scleroderma.org.au Contact Us The post Scleroderma QLD – Gold Coast Support Group April 8, 2024) appeared first on Scleroderma Australia ..read more

Come along to the Toowoomba Support Group Meeting. Everyone is welcome to come along for support, friendship and information. Stay and enjoy lunch following the meeting. Date: April 6, 2024 Time: 10:00 am  Location: Burke & Wills Hotel – 554 Ruthven St, Toowoomba Phone:  0468 801 021 Email: info@scleroderma.org.au Contact Us The post Scleroderma QLD – Toowoomba Support Group (April 6, 2024) appeared first on Scleroderma Australia ..read more