Understanding SMA
This booklet covers all the basics of SMA, including genetics, diagnosis, types of SMA, daily life with SMA, and much more. In addition to being available in English, this booklet has been translated into several additional languages.
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Community Support Services
This booklet outlines our resources and support programs, including ongoing national and local programs, ways to stay connected, and more.
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SMA Diagnosis from Newborn Screening (Family Guide)
These booklets are intended to provide a foundation for understanding SMA if you are a parent, patient or provider learning about an SMA diagnosis for the first time.
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Nutrition Basics
This booklet explores the nutrition principles for someone living with SMA, potential complications, feeding tubes, and more.
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Genetics of SMA
This booklet helps navigate conversations about genes, proteins, and DNA related to SMA. It includes definitions, explanations, and diagrams.
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Health Insurance Roadmap
This booklet focuses on common insurance-related questions, guidance on talking to insurers about treatment, a glossary of terms, and more.
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Considering Drug Combinations
This booklet focuses on the complex topic of combining treatments and discusses important considerations when thinking about combo therapy.
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Learning About Clinical Trials
This booklet covers the clinical trial process, phases, accelerated approval and expanded access, choosing to participate, and more.
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Caring for Emotional and Mental Health
This booklet outlines mental and emotional health considerations for those with SMA or those who care about someone who has SMA, as well as strategies for support and coping.
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Living Unlimited: Newly Diagnosed
This booklet is for new members of the SMA community experiencing an SMA diagnosis for the first time and wondering how it will impact the life of their child and that of the family.
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Living Unlimited: Adults with SMA
This booklet is geared for adults with SMA. Thanks to contributions and feedback from other adults with SMA, we have collectively pulled together this booklet on topics that are important to the adult community specifically. |
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Understanding SMA (Spanish) |
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Community Support Services (Spanish) |
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SMA Diagnosis from Newborn Screening (Family Guide) (Spanish) |
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Nutrition Basics (Spanish) |
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Genetics of SMA (Spanish) |
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Health Insurance Roadmap (Spanish) |
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Considering Drug Combinations (Spanish) |
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Caring for Emotional and Mental Health (Spanish) |
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Living Unlimited: Newly Diagnosed (Spanish) |
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