Rick Zbur and his late sister Jackie, who suffered from ALS. Courtesy of Zbur’s office After fourteen years of supporting ALS families, I know firsthand the relentless challenges of living with ALS. For families affected by this rare, fatal disease, the journey is grueling — not only because of the diagnosis itself but due to a healthcare system that often feels fragmented and insufficient. That’s why California’s recent decision to create a Rare Disease Advisory Council is a milestone that brings new hope to people living with ALS and their families. California’s RDAC will bring patients, caregivers, healthcare professionals, and policymakers together to tackle the unique challen
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