News & Events
We are excited to share with you details about our upcoming events. Whether you are a first-time visitor or a returning member, we hope that you will find the information you need and feel inspired to join us or meet us in person. Our team works hard to create and attend beneficial global events and initiatives.
Latest News
December 2023
Ethical aspects of the changing landscape for spinal muscular atrophy management in Australia
IN 2017, the Australian Federal Health Minister Greg Hunt MP announced two funding items that had been highly anticipated by those affected by spinal muscular atrophy (SMA). First, there would be support for a large national research trial of reproductive genetic carrier screening – Mackenzie’s Mission. Second, there would be funding to allow access to a new drug treatment for SMA.…READ MORE
November 2023
Gene therapy-based strategies for spinal muscular atrophy — an Asia-Pacific perspective
Onasemnogene abeparvovec has been life-changing for children with spinal muscular atrophy (SMA), signifying the potential and progress occurring in gene- and cell-based therapies for rare genetic diseases. Hence, it is important that clinicians gain knowledge and understanding in gene therapy-based treatment strategies for SMA. In this review, we describe the development and translation of onasemnogene abeparvovec from clinical trials to healthcare practice and share knowledge on the facilitators and barriers to implementation…READ MORE
June 2023
Real-World Evidence: APPIS Media Interview with Pharma Focus Asia
Recently Advocacy Beyond Borders Network Legacy Lead, Julie Cini OAM, was interviewed about how real- world evidence is important to help shape healthcare policies. Drawing on her understanding of treatment and how real-world evidence can provide valuable insights to payers, the article showcases the importance of data collection and the value of a patient community input for these stakeholders to ensure better patient outcomes.
Global Patient Group Networking Virtual Events: Zoom
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June 2023
Monday 19 June 2023
5:00PM EST. Melbourne/AustraliaJoin us for our June Patient Group Networking event on Zoom. Register your details to attend. We look forward to meeting you!
This is a non-recorded meeting.
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August 2023
Monday 21 August 2023
5:00PM EST Melbourne/AustraliaJoin us for our August Patient Group Networking event on Zoom. Register your details to attend. We look forward to meeting you!
This is a non-recorded meeting.
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October 2023
Monday 16 October 2023
5:00PM EST Melbourne/AustraliaJoin us for our October Patient Group Networking event on Zoom. Register your details to attend. We look forward to meeting you!
This is a non-recorded meeting.
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December 2023
Monday 18 December 2023
5:00PM EST Melbourne/AustraliaJoin us for our December Patient Group Networking event on Zoom. Register your details to attend. We look forward to meeting you!
This is a non-recorded meeting.