Welcome to the TBR1 Syndrome Support Group

A global, parent-led hub for TBR1-related neurodevelopmental disorders

What is TBR1 syndrome?

Rare diagnosis, strong community

Connecting families, clinicians, and researchers so no one feels alone

Read family stories

Advancing understanding of the TBR1 gene

Partnering with researchers to unlock answers and improve outcomes

Explore research & registry
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TBR1 syndrome is rare, but you are not alone

Parents and child learning about TBR1 syndrome

We are here to walk beside you after a TBR1 diagnosis.

Watch how parents, clinicians, and researchers are working together to support children with TBR1-related neurodevelopmental differences.

Parent reading about the TBR1 gene

Learn about the TBR1 gene & IDDAS

TBR1 syndrome families connecting online

Find other TBR1 families worldwide

Researcher studying brain development

Support TBR1 research & data sharing

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Together we can change the future of TBR1 syndrome

Learn

Clear, parent-friendly information about the TBR1 gene, TBR1 syndrome, and IDDAS to guide you after diagnosis.

Connect

A growing community of TBR1 families, caregivers, and advocates sharing lived experience and practical support.

Collaborate

Linking families with clinicians and researchers to share data, deepen understanding, and advance treatment options.

Give

Donations fuel awareness campaigns, educational resources, and research partnerships for TBR1 syndrome.

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Funding awareness, research, and support for TBR1-related neurodevelopmental disorders

Support our mission

200

children and adults with TBR1 variants identified worldwide (and counting)

30

clinicians, researchers, and advocates connected through our TBR1 community

When we found TBR1Syndrome.com, it was the first time we realized we weren’t the only family on this path.

TBR1 parent

Connecting families, clinicians, and researchers around one rare gene is how we turn uncertainty into progress.

Community organizer

Every story shared, every data point contributed brings us one step closer to answers for TBR1 syndrome.

Research partner

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Current TBR1 Initiatives

Family learning about TBR1 syndrome resources

Family Starter Guides in Multiple Languages

Creating accessible TBR1 syndrome information for newly diagnosed families around the world.

  • Goal: $15,000
  • Raised: $6,000
Support this project
Online TBR1 family support meeting active

TBR1 Family Support & Connection

Hosting virtual meetups, Q&As, and peer support spaces for TBR1 caregivers.

  • Goal: $10,000
  • Raised: $7,500
Fund family support
Research team collaborating on TBR1 data

TBR1 Research Partnerships & Data Registry

Building stronger bridges between families and scientists studying the TBR1 gene and brain development.

  • Goal: $25,000
  • Raised: $12,500
Advance TBR1 research
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Give TBR1 families a roadmap, not just a diagnosis

Family support

Medical insight

Education & therapies

A TBR1-related diagnosis often arrives with more questions than answers. We help families find trusted information on TBR1 syndrome and IDDAS, connect with experienced parents, and navigate medical, therapeutic, and educational options. Your support helps us create clear, up-to-date resources that families and clinicians can rely on in those first overwhelming weeks and in the years that follow.

Global TBR1 syndrome support network
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TBR1 syndrome support reaches families around the world

Our community includes families from multiple countries, speaking different languages, and accessing different healthcare and education systems. By sharing stories, translating resources, and partnering across borders, we create a stronger foundation for every child and adult living with a TBR1-related neurodevelopmental disorder.

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Make a Donation to TBR1 Syndrome Support

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Our Parent-Led Team & Advisors

Parent leader representing TBR1 community

Parent Advocate

Founder & TBR1 parent
TBR1 community coordinator

Community Lead

Family support & outreach
TBR1 scientific advisor

Scientific Advisor

Genetics & research liaison
TBR1 family representative

Family Representative

Parent voice & advocacy
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Our fingerprints on the lives we touch in TBR1 will never fade

Join the TBR1 community
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Recent TBR1 News & Stories

09 Mar, 2025 Parent reading about TBR1 syndrome

What We Know Today About TBR1 Syndrome & IDDAS

An overview of the TBR1 gene, how TBR1-related neurodevelopmental disorders present, and where families can find trusted information and support after diagnosis.

Read the article

Share TBR1Syndrome.com with a family or clinician

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Explore all TBR1 syndrome resources

View resources