Session objectives:
- Underline the role of patient perspectives in shaping regulatory policies.
- Explore best practices and capacity-building examples across the Asia region.
After losing two daughters to the disease, Julie has spent 20 years campaigning and advocating for better access to treatment for those living with Spinal Muscular Atrophy (SMA). Her efforts have resulted in access to 3 high-cost treatments for the community in Australia.
She also campaigned for a national newborn screening program for SMA and genetic testing for SMA, Cystic Fibrosis and Fragile X to be fully reimbursed through Medicare. Julie was the founder and former CEO of SMA Australia, is now a Director of Advocacy Beyond Borders, and runs her own wedding business.
Session objectives:
