Events

Sept 22-23, 2023

Cincinnati Children’s Hospital Liberty Campus

7777 Yankee Road 

Liberty Township (Cincinnati), Ohio

 

Click Link to RSVP:  https://redcap.link/ozjdk9xx

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Inaugural in-person meeting designed to bring patients, families, and researchers together to learn, connect, and innovate.

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Attend in person to:

• Meet other families impacted by IRF2BPL/NEDAMSS.

• Learn from clinicians and investigators about management options. 

• Allow researchers and clinicians to learn about you and/or your loved one’s unique qualities and needs.

• Contribute to research and make a difference.

• Biorepository and blood sample collection by Combined Brain