Want to create an interactive transcript for this episode?
Podcast: Pushing Forward with Alycia | A Disability Podcast
Episode: The Zebra in the Room: What Rare Disease Patients Want the World to Know
Description: Pushing Forward with Alycia introduces Lynsey Chediak, a disabled woman and rare disease advocate whose lived experience has shaped work spanning government, global health policy, and biotech. Lynsey shares growing up with arthrogryposis alongside an unaffected twin sister, realizing her difference at school, while also navigating chronic pain, limited medical answers, and systems not built for patients. Additionally, she speaks about how insurance barriers before the Affordable Care Act impacted access. Lynsey discusses rare disease priorities, which includes faster diagnosis, better treatment access, and policy change. Her role at BioMarin involves work to remove prior authorization in California and...