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Elevating Patients’ Voice in Policy Advocacy | An SMA Perspective
Julie Cini, CEO of Advocacy Beyond Borders, lost two beautiful baby girls to spinal muscular atrophy (SMA), a rare genetic disorder, over a short span of three years. These tragedies didn’t break her, but instead they drove her to invest all her energy into patient advocacy and fulfilled her vow to “fix this disease for kids in Australia”.
Uncover how she overcame roadblocks to shake up the Australian healthcare landscape of newborn screening and genetic carrier screening, to getting three life-changing SMA wonder drugs passed in Australia.
In the video, Julie also talked about prioritizations, striking up partnerships, amplification of patients’ voice, funding and engaging patients in the policy advocacy.
About Advocacy Beyond Borders
About spinal muscular atrophy (SMA)