The Simons Searchlight team hosted a family and research conference for the CSNK2A1, HIVEP2, MED13L, and SETBP1 genetic communities in Baltimore, Maryland. Families like yours are the key to making meaningful progress. Your unique experience could hold the clues that scientists need to find answers for you and others with rare genetic disorders.

Thank you for attending and sharing your insights!

A special thank you to the patient advocacy organizations for their partnership on this successful conference: CSNK2A1 Foundation, Hope for HIVEP2,  Med13L Foundation, and SETBP1 Society.

Below you will find a YouTube playlist with all the presentations from the conference and a gallery featuring some pictures from the event (names of individuals have been removed to respect any privacy concerns).

Conference presentation recordings (a YouTube playlist)

Click on the playlist below to view all videos