Opinion: California’s Rare Disease Council Will Transform Care for People with ALS ...Middle East

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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