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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.
Body-Focused Repetitive Behaviors in Patients with FOXP1 Syndrome: An International Cross-Sectional Survey-Based Study - April 2024 Link
A validated survey assessing for BFRBs was administered to parents attending the International FOXP1 Foundation conference on June 21, 2023, and was sent to a FOXP1 syndrome contact list.
RareX Data Analysis ~ Dec 2023 Link
Data was compiles and analysised by RareX, data was contributed by 151 FOXP1 families
National Order of Rare Disorders - NORD Link
FOXP1 Glossary of Terms Link
This list of terms was compiled by the International FOXP1 Foundation