​FOXP1 syndrome, first diagnosed in 2009, is a rare genetic disorder characterized by delays in early motor and language milestones, mild-to-severe intellectual deficits, speech and language impairment and behavior abnormalities. 

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Though challenging to diagnose initially, advances in genetic testing have enabled the identification of several hundred cases worldwide. Despite this, FOXP1 syndrome remains a rare condition, and its genetic basis and clinical spectrum are still being explored.

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With the desire to fill the gap in scientific information, a group of families first met online in a group called The RareConnect FOXP1 Community. Facebook groups were subsequently created to allow families to meet, compare experiences, and discuss strategies to improve the lives of their children with FOXP1 Syndrome.

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In 2018, a group of parents in France gathered to share their experiences. The following year, in June 2019, twenty families from several countries attended a conference at The Seaver Autism Center at Mount Sinai Hospital in New York City. Leading researchers presented on FOXP1 Syndrome and related areas of autism research, while families had the chance to meet and exchange information.

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Building on the conference's success, parent volunteers launched The International FOXP1 Foundation (IFF), which was officially established in the fall of 2020. The foundation, with its Board of Directors, is dedicated to working with medical professionals and organizations to advance knowledge and resources for those affected by FOXP1 syndrome.