On April 8-9th the kick-off meeting of the CARE4ARID1B consortium natural history study was held, featuring the leading researchers from the seven participating countries (Germany, Italy, France, Canada, Turkey, Sweden, and Israel). In September this year, they will begin collecting extensive information from over a hundred children and adolescents with ARID1B-RD for three years. This game-changing effort will provide the most thorough evaluation of ARID1B-RD to date and will lay the groundwork for future clinical trials. A huge thank you to the researchers and the ARID1B-RD families who attended the meeting to provide feedback and share their valuable family perspectives. We look forward to sharing many more updates and opportunities to contribute to this pivotal study.

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