Newborn Screening Bootcamp
We're excited to be part of the most current conversations and developments in Newborn Screening. During this action-packed day, we'll engage with fellow rare disease organizations, focusing on the most effective ways to interact within the system and with key stakeholders at both the state and federal levels. Better and expanded early diagnostics are some of the best weapons in our arsenal to help bring an end to Asplenia Mortality.
Co-hosted by the EveryLife Foundation for Rare Diseases and Expecting Health
Asplenia is the absence of the spleen.
Isolated Congenital Asplenia (ICA) is a birth defect in which one of the following occurs:
There is no spleen
There is only part of a spleen
There is a spleen but it's non functioning
NFL Hall of Famer Drew Pearson returns to Tee It Up to Fight Asplenia
Although rare, Isolated Congenital Asplenia is severely underdiagnosed as it's usually only discovered at autopsy after a child has suddenly died from sepsis.
To end childhood death from Isolated Congenital Asplenia, much more research is needed to learn about its cause, diagnosis and treatment.
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Sometimes superheroes reside in the hearts of
small children fighting big battles.