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New to FOXP1

Welcome to the International FOXP1 Community!

We are glad you have found our website, as we hope this information will help you gain an understanding of the FOXP1 Syndrome.  Most likely you have landed on this page because your child, or some one very dear to you has recently received the genetic tests results that they have FOXP1 syndrome.  This website is maintained by the International FOXP1 Foundation, a non-profit organization registered in the United States, operated 100% by volunteers, and is connected with FOXP1 families around the globe.  

 

As parents of children with FOXP1, we know the struggle to understand this condition,  especially when one first receives the diagnosis.   This page is a collection of quick links to information on this site that we think are the most important for families new to the FOXP1 community.   As you search for a better understanding, please remember that the first diagnosis of FOXP1 syndrome was only in 2011, so this rare genetic disorder is very new and is just beginning to be understood by the research and medical communities.  The Foundation's mission is to build a global community that empowers and supports families and individuals with FOXP1 syndrome by sharing knowledge, inspiring hope, encouraging research, and raising awareness.   We are always working to encourage more research around the globe.

What is FOXP1 Syndrome?

Genetics

 

FOXP1 Characteristics

FOXP1 Treatments

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Speech, language, and FOXP1 syndrome Fact Sheet     Link

by Dr Ruth Braden and Prof Angela Morgan, Translational Centre for Speech Disorders Murdoch Children’s Research Institute, Victoria Australia

 

FOXP1 Gene Guide  Link

by Simons Searchlight.  This guide was compiled by Simons Searchlight, the content in this guide comes from published studies about FOXP1-related syndrome. It outlines the basic characteristics of FOXP1 syndrome in an easy to understand format..

A Family Guide, Navigating Life after a Rare Genetic Diagnosis Link

by Simons Searchlight.  This guide covers the steps from genetic diagnosis to finding resources and potential treatments for rare genetic neurodevelopmental disorders. It is designed to help caregivers and families navigate the complicated world of rare diseases.

 

Supporting Siblings of Children with a Rare Genetic Condition  Link

by Rare Chromosome Disorder Support Group.   This article summarizes the research findings of siblings and provides suggestions for ways that parents can support the positive development and well-being of all their children.

Why Should I Get Genetic Testing If I Already Have a Diagnosis?

The National Organization for Rare Disorders (NORD) has published new animated videos in English and Spanish about why rare disease patients should get genetic testing if they already have a diagnosis. These resources provide basic information about genetic testing and how to access it. They also address why it may be important – even for those who have a diagnosis – to know the specific gene changes or variants that cause their disease. For instance, knowing the specific variants may: 

  • help the medical team plan more personalized patient care, 

  • determine eligibility for research studies, and 

  • be helpful in family planning.

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