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Rare disease spotlight


@DrLeanaWen Where’s the evidence for these claims? Yesterday you were saying we don’t have time for science. Why should anyone believe you?

Welcome to #ANEawareness Day 2021. Our aim today is to raise awareness of Acute Necrotizing Encephalopathy worldwide. ANE affects families from all corners of the globe. We start our Awareness Day in the southern hemisphere and work our way time wise to the north.

The HI Global Registry is seeking participants, any adult living with HI or parent of a child with HI can register. Share the registry link ( with HI community members so their experiences can be included in future reporting.

We are honored to be recognized for our work in helping the #raredisease community during the COVID-19 pandemic.

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For more resources about COVID-19 and rare diseases, please visit:

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