In the rare disease community, early diagnosis can put patients on a treatment plan faster and improve outcomes. But that depends on accessible and affordable screenings, genetic testing, and holistic care. Thankfully, there are policy solutions to make that a reality.
August marked Spinal Muscular Atrophy (SMA) Awareness month, so we hear how this community advocates for greater access and affordability to improve care. We get the policy takeaways on how you can raise your voice for the rare disease community. Plus, hear one family’s story about their daughter’s diagnosis of SMA and why advancements in gene therapy are crucial.
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
ChiChi Nnoli, Patient Correspondent
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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