SADS Supports Telehealth

SADS Foundation supports telehealth for our community. It has been extremely useful during COVID, of course. But we believe that it has also opened an opportunity that will allow folks to “see” SADS experts even when they are not in the town and thus greatly improve access for families.

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This important piece of legislation will advance patient-focused drug development (PFDD) work at the FDA. Past acts have spurred much progress, and the FDA now works closely with patient advocacy groups on developing and listening to Patient Focused Drug Development. We believe now is the time to take that work to the next step.

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AAP Guidelines

The Sudden Arrhythmia Death Syndromes Foundation (SADS) Foundation supports the call for all children to be screened for conditions that can lead to cardiac arrest or death, not just athletes. In an updated policy statement, the American Academy of Pediatrics and the Pediatric and Congenital Electrophysiology Society (PACES) outline new screening questions that can help identify warning signs in all children, and provide the next steps to take if a child displays one of the warning signs.

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As a volunteer, you can help more families receive a life-saving diagnosis, more medical professionals learn about SADS conditions, more kids experience a safe school environment, more individuals with a SADS condition realize they are not alone, and strengthen the SADS community.

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Your personal story can drive positive change for other SADS families! Whether you’re looking to increase awareness in your city or state by telling your story to the media, or to help shape U.S. legislative policies that impact our rare disease families, your story is powerful, important – and can make a real difference for the SADS community.