Resources for Families

A comprehensive source of information for JGA families – all in one place

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New Families Packet

A one-stop-shop of information and resources for new JGA families

updated roadmap 2026

JGA Roadmap

Roadmap for new JGA families

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Care Before the Cure

A guidebook developed by the JGA team about how to best support individuals with Jordan's Syndrome

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Living with Jordan's Syndrome

In-depth look at Jordan's Syndrome

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Advocacy One Sheet

A rundown of how you can get invovled and join our advocacy efforts

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JGA Ambassadors

Information about the JGA Ambassadors program

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Let's Be Friends

JGA children's book helping classmates become familiar with Jordan's Syndrome

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Living with Hypotonia

How Jordan's Syndrome impacts children in school: Hypotonia

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High-Level Research Summary

Updates from JGA researchers (March 2021)

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Simon's Searchlight Fact Sheet

Information about JGA's important partnership with Simon's Searchlight

Sibling

Project Halo

A safe space for siblings of individuals with Jordan’s Syndrome to connect, share, learn and support each other

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Sibling Resources

Resources for siblings of individuals with Jordan's Syndrome

JS Patient Input Survey 2026

Jordan's Syndrome Patient Input Survey (2026)

100+ JGA families reveal what it's like to live with Jordan's Syndrome