SETD5 Syndrome Facebook Group
The primary peer support community for SETD5 Syndrome families worldwide. Connect with parents, caregivers, and adults living with the diagnosis.
Visit GroupCommunity & Links
External links to support groups, rare disease organizations, genetics databases, and US benefit programs, organized by category.
Browse DirectorySETD5 Syndrome: At a Glance
A one-page overview of key facts, common features, and resources. View online, translate, or download as a PDF.
View HandoutMedical Appointment Handout Builder
Build a handout specific to your child. Select only the features that apply and generate a one-page summary tailored to their profile.
Open BuilderSchool Meeting Handout Builder
A few quick questions and you'll have a custom handout ready for IEP meetings, evaluations, or a new teacher.
Open BuilderSupport Programs Overview
An overview of programs families sometimes explore: Early Intervention, school services, SSI, Medicaid, HCBS waivers, and Disabled Adult Child benefits.
View GuideSchool & IEP Guide
Navigating special education for your child with SETD5 Syndrome: your rights, the IEP process, and how to advocate effectively.
View GuideDisability Discounts Guide
Nationwide discount programs for disabled children and adults in the United States, plus how to find state-specific savings.
View GuideResearch Registries
Why joining a research registry matters for the SETD5 community, and an overview of Simons Searchlight, Brain Gene Registry, and GenomeConnect.
View GuideSETD5 Syndrome and You
A short illustrated story for kids explaining what SETD5 Syndrome means in simple, kind language. Flip through the pages together.
Read the BookMedical Terms in Plain Language
Definitions of medical, genetic, and service-related words that appear in SETD5 Syndrome reports, appointments, and research -- alphabetically organized with a search bar.
View GlossaryAcronym Glossary
Plain-language explanations of abbreviations families encounter across education, benefits, medical, genetics, and research settings -- from IEP and SSI to WES and VUS.
View Glossary