severe congenital nemaline myopathy

ORPHA: 171430

Overview

Severe congenital nemaline myopathy is a severe form of nemaline myopathy (NM; see this term) characterized by severe hypotonia with little spontaneous movement in neonates

Available Treatments (0)

No treatments linked yet

Clinical trials or compassionate use may be available — consult a specialist.

Clinical Presentation

Signs and symptoms associated with severe congenital nemaline myopathy, sourced from HPO and Orphanet clinical annotations.

Breech presentationDysphagiaRespiratory distressHypokinesiaRespiratory failureSkeletal muscle atrophyAxial muscle weaknessNemaline bodiesType 1 muscle fiber predominanceMultiple prenatal fracturesSevere muscular hypotoniaIncreased connective tissueFacial palsyHypospadiasMicropenisLarge fontanellesMicrognathiaLow-set earsPtosisOphthalmoplegiaAbnormality of the diaphragmThin ribsAdducted thumbGait disturbanceTremorFacial diplegiaPremature birthCardiomegalyDilated cardiomyopathyCardiac arrestAbnormal thorax morphologyMotor delayNeonatal hypotoniaFlexion contractureDecreased fetal movementPolyhydramniosTalipes equinovarusPulmonary hypoplasiaFallsScoliosisArthrogryposis multiplex congenitaEdema of the dorsum of handsFeeding difficulties in infancy

Classification & Codes

Orphanet Code

ORPHA:171430
severe congenital nemaline myopathy
OrphanetORPHA:171430
Treatments0 drug(s)
Symptoms on record43 signs
Statuspublished
Factual Authority
Last Updated3/20/2026
Clinical DataHPO · Orphanet
Drug DataFDA · EMA · CDSCO
severe congenital nemaline myopathy | OrphanDrug