top of page

Resursi

Explore the resources below to find a wide range of helpful tools, comprehensive guides, and valuable information designed to support you at every step of your journey.

Overview Brochure - Get a quick, informative overview of FOXP1 syndrome with this summary brochure, covering key facts about FOXP1 syndrome. 

Scientific Brochure - Explore this in-depth scientific brochure for a comprehensive understanding of FOXp1 syndrome, including its genetic basis, clinical features, and current research advancements.

Speech and Language Fact Sheet -  Provided by Translational Centre for Speech Disorders Murdoch Children’s Research Institute Victoria Australia

Care Guidelines - Access essential care guidelines for FOXP1 syndrome, including  ongoing management of the condition.

FOXP1 Gene Guide - 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.

Genetics Overview - This overview was prepared by the International FOXP1 Foundation. 

FOXP1 Fact Sheet - 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.

FOXP1 Glossary of Terms - This list of terms was compiled by the International FOXP1 Foundation.

Financial Planning, and Legal Guardianship - This summary document was prepared by the International FOXP1 Foundation.



Family Conference Resources

Family Conference 2023 Presentations - The 4 presentations were recorded and are available on our FOXP1 YouTube.

Family Conference 2023 Posters - The Poster Boards that were presented at the 2023 Family Conference.



Rare Disease Organization Resources

Why Should I Get Genetic Testing If I 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.

Supporting Siblings of Children with a Rare Genetic Condition - 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.​​

Clinvar - Explore ClinVar for a comprehensive database of genetic variants and their links to human health.

A Family Guide, Navigating Life after a Rare Genetic Diagnosis - 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.

​

​

​

​​NORD - National Organization for Rare Disorders - Their mission is to advance 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.


Discounts

Billy Footwear - Billy Footwear works with nonprofits to offer the ability to purchase their shoes at a discount, while also giving back to the nonprofit. They offer a 10% discount on their shoes when purchased through the link above, and give 5% back to our organization.

bottom of page