Family Resources

Empowering families with clear, accessible information about CLTC-related Intellectual Disability to support daily life and medical care.

What Does CLTC Do?
An accessible explanation of clathrin, its delivery-service role in neurons, and how gene variants cause CLTC-ID.
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The First 100 Days
A chronological roadmap for families newly diagnosed with CLTC-related intellectual disability to navigate the first 100 days.
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Insurance & Financial Support
Guidance on navigating insurance prior authorizations, Medicaid waivers, and disability benefits for CLTC-ID families.
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Symptoms & Daily Management
A chronological life-stage guide from infancy through adulthood.
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Understanding Your Genetic Report
A step-by-step guide to decoding the terminology in your genetic test results.
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CLTC Mutation Types
A plain-language guide to the five major types of CLTC genetic changes, ordered from least to most severe.
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Partnering With Your Medical Team
A checklist of recommended baseline assessments — MRI, EEG, parental genetic testing — and guidance on coordinating your care team.
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Find a Specialist
Community-recommended geneticists, neurologists, and developmental pediatricians with CLTC experience, organised by country.
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