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Living with Familial developmental dysphasia

A language disorder in children that makes speaking and understanding speech difficult, running in some families.

Understanding Familial developmental dysphasia

Familial developmental dysphasia is a language disorder that develops in childhood, with difficulty speaking and understanding spoken words.

The difficulties are not explained by hearing, intellectual, autism spectrum, or other developmental problems, a brain injury, or the child's social setting. Cases have been reported to run in families.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Trouble finding words
  • Delayed spoken language (expressive language delay)
  • Speech that is hard to understand

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include brain and nervous system specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Apraxia Kids and Childhood Apraxia Treatment may keep lists of experts for this condition.

Care & treatment

Care team
Brain and nervous system specialists (neurologists)
Expert care
Expert lists: Apraxia Kids, Childhood Apraxia Treatment
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with Apraxia Kids and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Would speech and language therapy help my child?
Which tests can rule out hearing or other causes?
Which specialists should be on the care team?

Quick facts

Symptoms usually startChild
InheritanceAutosomal Dominant

In families where it has been described, it is inherited in an autosomal dominant way, which means a change in one copy of the gene can cause it. GARD does not name the gene.

Neurological

Also known as: billard toutain maheut syndrome; billard-toutain-maheut syndrome; foxp2-associated dysphasia

Patient organizations

Source: NIH GARD · Familial developmental dysphasiaGARD ID 1823 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Familial developmental dysphasia.

Explore the Familial developmental dysphasia blog

Explore research for Familial developmental dysphasia

Explore actively recruiting Familial developmental dysphasia studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Familial developmental dysphasia with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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