Resources
This page will expand as we gather more information to help families care for their child or adult fox. If you have reference material on therapies, or aids to assist foxes in areas of speech therapy, occupational therapy, physio therapy, incontinence, or any other manifestation that you would like to share on this page, please send to it info@foxp1.org.
Reference Documents and Links to Resources
Fact Sheets and Guides
FOXP1 Fact Sheet Link
This summary document was prepared by the International FOXP1 Foundation with assistance and review by investigators at the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai in New York and the INSERM in Paris.
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.
Financial Planning, and Legal Guardianship the focus is American citizens Link
This summary document was prepared by the International FOXP1 Foundation.
GeneReview Publications
FOXP1 Syndrome definition published in the National Library of Medicine Link
Written and reviewed by: Gudrun Rappold, PhD, Paige Siper, PhD, Ana Kostic, PhD, Ruth Braden, PhD, Angela Morgan, PhD, Saskia Koene, MD, PhD, and Alexander Kolevzon, MD.
FOXP1 Syndrome definition published in the Europe PMC (PubMed Centre) Link
Written and reviewed by: Gudrun Rappold, PhD, Paige Siper, PhD, Ana Kostic, PhD, Ruth Braden, PhD, Angela Morgan, PhD, Saskia Koene, MD, PhD, and Alexander Kolevzon, MD.
FOXP1 Syndrome definition published in Orphanet Link
Written and reviewed by: Gudrun Rappold, PhD, Paige Siper, PhD, Ana Kostic, PhD, Ruth Braden, PhD, Angela Morgan, PhD, Saskia Koene, MD, PhD, and Alexander Kolevzon, MD.
Orphanet website is the portal for rare diseases and orphan drugs.
Rare Disease Organizations
RARE X Data Analysis ~ Dec 2023 Link
Data was compiles and analysised by RareX, data was contributed by 151 FOXP1 families
NORD - National Order of Rare Disorders Link
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:
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help the medical team plan more personalized patient care,
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determine eligibility for research studies, and
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be helpful in family planning.
FOXP1 Glossary of Terms Link
This list of terms was compiled by the International FOXP1 Foundation
FOXP1 Global Cencus 2024 Q3 Poster Link
As of November 2024, 596 individuals with FOXP1 Syndrome have registered with a foundation. This number represents those families that have registered with the International FOXP1 Foundation on the Join-Us page, or registered with their national FOXP1 association.
We ask that all persons with FOXP1 syndrome register with the foundation, as this will attribute to research of this syndrome.