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Trees and Mountains

Resources

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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

Their mission is to advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.  They provide support for patients, care givers and organizations.

FOXP1 Glossary of Terms     Link

This list of terms was compiled by the International FOXP1 Foundation

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