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Síndrome Borjeson-Forssman-Lehmann
ORPHA:127CID-10 · Q87.8CID-11 · LD29OMIM 301900DOENÇA RARA

Síndrome ligada ao X caracterizada por déficit intelectual, obesidade troncular, características faciais características, hipogonadismo, dedos afilados e dedos curtos.

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Introdução

O que você precisa saber de cara

📋

Síndrome ligada ao X caracterizada por déficit intelectual, obesidade troncular, características faciais características, hipogonadismo, dedos afilados e dedos curtos.

Publicações científicas
84 artigos
Último publicado: 2026 Mar 24

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
<1 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
50
pacientes catalogados
Início
Neonatal
🏥
SUS: Cobertura mínimaScore: 20%
Triagem neonatal (Fase 5)CID-10: Q87.8
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (5)
0202010503
Cariótipo — bandas G, Q ou Rgenetic_test
0202010600
Pesquisa de microdeleções/microduplicações por FISHlab_test
0202010694
Sequenciamento completo do exoma (WES)rehabilitation
0202010260
Dosagem de alfa-fetoproteína
0301070040
Atendimento em reabilitação — doenças raras
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

Preparando trilha educativa...

Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Partes do corpo afetadas

🦴
Ossos e articulações
12 sintomas
🧠
Neurológico
8 sintomas
👁️
Olhos
6 sintomas
📏
Crescimento
6 sintomas
👂
Ouvidos
2 sintomas
😀
Face
2 sintomas

+ 14 sintomas em outras categorias

Características mais comuns

90%prev.
Deficiência intelectual
Muito frequente (99-80%)
90%prev.
Criptorquidia
Muito frequente (99-80%)
90%prev.
Lóbulo da orelha grande
Muito frequente (99-80%)
90%prev.
Hipoplasia do pênis
Muito frequente (99-80%)
90%prev.
Escroto pequeno
Muito frequente (99-80%)
90%prev.
Ginecomastia
Muito frequente (99-80%)
53sintomas
Muito frequente (16)
Frequente (6)
Ocasional (12)
Sem dados (19)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 53 características clínicas mais associadas, ordenadas por frequência.

Deficiência intelectualIntellectual disability
Muito frequente (99-80%)90%
CriptorquidiaCryptorchidism
Muito frequente (99-80%)90%
Lóbulo da orelha grandeLarge earlobe
Muito frequente (99-80%)90%
Hipoplasia do pênisHypoplasia of penis
Muito frequente (99-80%)90%
Escroto pequenoSmall scrotum
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico84PubMed
Últimos 10 anos34publicações
Pico20205 papers
Linha do tempo
2026Hoje · 2026📈 2020Ano de pico
Publicações por ano (últimos 10 anos)

Triagem neonatal (Teste do Pezinho)

👶
Teste: qPCR para deleção de SMN1 em sangue seco
Fase 5 do PNTNpending
Incidência no Brasil: 1:10.000

A triagem neonatal permite diagnóstico precoce e início imediato do tratamento.

Encontrou um erro ou informação desatualizada? Sugira uma correção →

Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

1 gene identificado com associação a esta condição. Padrão de herança: X-linked recessive.

PHF6PHD finger protein 6Disease-causing germline mutation(s) (loss of function) inAltamente restrito
FUNÇÃO

Transcriptional regulator that associates with ribosomal RNA promoters and suppresses ribosomal RNA (rRNA) transcription

LOCALIZAÇÃO

NucleusNucleus, nucleolusChromosome, centromere, kinetochore

MECANISMO DE DOENÇA

Boerjeson-Forssman-Lehmann syndrome

An X-linked recessive disorder characterized by moderate to severe intellectual disability, epilepsy, hypogonadism, hypometabolism, obesity with marked gynecomastia, swelling of subcutaneous tissue of the face, narrow palpebral fissure and large but not deformed ears.

EXPRESSÃO TECIDUAL(Ubíquo)
Ovário
26.9 TPM
Linfócitos
25.1 TPM
Fibroblastos
13.7 TPM
Cérebro - Hemisfério cerebelar
13.3 TPM
Glândula adrenal
12.1 TPM
OUTRAS DOENÇAS (1)
Borjeson-Forssman-Lehmann syndrome
HGNC:18145UniProt:Q8IWS0

Variantes genéticas (ClinVar)

258 variantes patogênicas registradas no ClinVar.

🧬 PHF6: NM_001015877.2(PHF6):c.-46-2A>G ()
🧬 PHF6: NM_001015877.2(PHF6):c.181dup (p.Ser61fs) ()
🧬 PHF6: GRCh37/hg19 Xq23-28(chrX:113417246-155233731)x1 ()
🧬 PHF6: GRCh37/hg19 Xq26.1-26.3(chrX:128882432-134384406)x3 ()
🧬 PHF6: NM_001015877.2(PHF6):c.834+46T>C ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 148 variantes classificadas pelo ClinVar.

15
74
59
Patogênica (10.1%)
VUS (50.0%)
Benigna (39.9%)
VARIANTES MAIS SIGNIFICATIVAS
PHF6: NM_001015877.2(PHF6):c.181dup (p.Ser61fs) [Pathogenic]
PHF6: NM_001015877.2(PHF6):c.789T>G (p.Phe263Leu) [Likely pathogenic]
PHF6: NM_001015877.2(PHF6):c.1077GCA[1] (p.Gln361del) [Uncertain significance]
PHF6: NM_001015877.2(PHF6):c.617G>A (p.Ser206Asn) [Uncertain significance]
PHF6: NM_001015877.2(PHF6):c.591T>G (p.Asp197Glu) [Uncertain significance]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Síndrome Borjeson-Forssman-Lehmann

🗺️

Selecione um estado ou use sua localização para ver resultados.

Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.

Pesquisa ativa

Ensaios clínicos abertos e novidades científicas recentes

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

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Publicações mais relevantes

Timeline de publicações
33 papers (10 anos)
#1

Regulation of physical activity and energy expenditure through Phf6 in the medial preoptic area.

Nature communications2026 Mar 24

Obesity arises from disrupted energy homeostasis, yet the neural mechanisms linking transcriptional regulation to energy expenditure remain unclear. Here, we identify plant homeodomain finger protein 6 (Phf6), a gene mutated in Börjeson-Forssman-Lehmann syndrome (BFLS), as a pivotal regulator of energy balance. Phf6 is enriched in a subset of estrogen receptor 1 (Esr1)-expressing neurons within the hypothalamic medial preoptic area (MPOA). Knockout of Phf6 in the MPOA leads to obesity in a sex-dependent manner by reducing physical activity and energy expenditure, independent of food intake. In female mice, MPOAPhf6 neurons respond to physical activity. Activation and inhibition of MPOAPhf6 neurons increases and decreases physical activity and energy expenditure, respectively. Phf6 sustains the intrinsic excitability of MPOAPhf6 neurons and their responsiveness to estrogen. Circuit mapping identified an MPOAPhf6-VMHvlEsr1 pathway mediating Phf6's effect on metabolism. These findings reveal a neurobiological basis for BFLS-associated obesity and highlight potential therapeutic targets.

#2

Orofacial clefting in PHF6-related Börjeson-Forssman-Lehmann syndrome.

BMJ case reports2026 Feb 25

Börjeson-Forssman-Lehmann syndrome (BFLS) is a rare X-linked neurodevelopmental disorder caused by pathogenic variants in the plant homeodomain finger protein 6 (PHF6) gene. Core features include developmental delay, intellectual disability, dysmorphic craniofacial characteristics, obesity, hypogonadism and digital anomalies. Orofacial clefting has not been recognised as part of the canonical phenotype and is rarely reported in association with BFLS. One cohort study listed cleft lip and/or palate as an uncommon feature without individual case details, and a separate report described a female with a nonsense PHF6 variant and clefting of the hard and soft palate. Here, we describe a BFLS female with a de novo missense PHF6 variant who presented with cleft palate. This case adds to the emerging evidence that clefting, though uncommon, may be a recurrent manifestation. It supports the inclusion of PHF6 in the genetic testing of patients presenting with syndromic orofacial clefting when accompanied by neurodevelopmental delay or dysmorphism.

#3

Börjeson-Forssman-Lehmann Syndrome in a Pediatric Patient: A Four-Year Longitudinal Case Report Focused on Functional Evolution and Rehabilitation.

Cureus2026 Jan

Börjeson-Forssman-Lehmann syndrome (BFLS) is a rare X-linked neurodevelopmental disorder caused by pathogenic variants in the plant homeodomain finger protein 6 (PHF6) gene, typically associated with intellectual disability, hypotonia, dysmorphic features, endocrinological abnormalities, epilepsy, and global developmental impairment. Most published literature focuses on genetic and phenotypic characterization, with limited information regarding rehabilitation or long-term functional outcomes. We report the longitudinal follow-up of a male child with genetically confirmed BFLS, monitored from the age of 7 months (December 2021) to the age of 4.5 years (October 2025) at the time of manuscript submission, while receiving multidisciplinary rehabilitation. Interventions included physiotherapy targeting postural control and antigravity activation, occupational therapy addressing sensory regulation and purposeful reaching, speech and feeding therapy providing oral-motor stimulation and saliva management, structured caregiver training, and the prescription of assistive devices such as adaptive seating systems and a standing frame. Despite severe axial hypotonia and global developmental delay, the child achieved gradual but modest gains in head control, brief supported sitting, visually guided reaching, and social engagement. Feeding transitioned from mixed oral intake to percutaneous endoscopic gastrostomy (PEG) dependence for nutritional safety and adequacy, while minimal oral stimulation was maintained. A review of the literature confirms that rehabilitation trajectories in BFLS are rarely described and that no standardized guidelines exist. This case contributes one of the few multi-year functional follow-ups available and highlights that early, sustained, and individualized multidisciplinary rehabilitation can promote incremental improvements in motor function, interaction, even in severe presentations, with meaningful implications for quality of life.

#4

Integration of Genome and Epigenetic Testing in the Diagnostic Evaluation of Developmental Delay: Differentiating Börjeson-Forssman-Lehmann (BFLS) and White-Kernohan (WHIKERS) Syndromes.

Genes2025 Aug 04

Background: More than 1500 genes are associated with developmental delay and intellectual disability, with variants in many of these genes contributing to a shared phenotype. The discovery of variants of uncertain significance (VUS) found in these genes during genetic testing can lead to ambiguity and further delay in diagnosis and medical management. Phenotyping, additional genetic testing, and functional studies can all add valuable information to help reclassify these variants. Here we demonstrate the clinical utility of epigenetic signatures in prioritizing variants of uncertain significance in genes associated with developmental delay (DD) and intellectual disability (ID). Methods: Genome sequencing was performed in a male with developmental delay. He was found to have VUSs in both PHF6 and DDB1 genes, linked with Börjeson-Forssman-Lehmann syndrome (BFLS) and White-Kernohan syndrome (WHIKERS), respectively. These two disorders share a similar phenotype but have distinct inheritance patterns and molecular pathogenic mechanisms. DNA methylation profiling (DNAm) of whole blood was performed using the clinically validated EpiSign assay. Results: The proband's methylation profile demonstrated a strong correlation with the BFLS methylation signature, supporting the PHF6 variant as a likely cause of his neurodevelopmental disorder. Conclusions: Epigenetic testing for disorders with distinct methylation patterns can provide diagnostic utility when a patient presents with variants of uncertain significance in genes associated with developmental delay. Epigenetic signatures can also guide genetic counselling and family planning.

#5

Loss of PHF6 causes spontaneous seizures, enlarged brain ventricles and altered transcription in the cortex of a mouse model of the Börjeson-Forssman-Lehmann intellectual disability syndrome.

PLoS genetics2024 Oct

Börjeson-Forssman-Lehmann syndrome (BFLS) is an X-linked intellectual disability and endocrine disorder caused by pathogenic variants of plant homeodomain finger gene 6 (PHF6). An understanding of the role of PHF6 in vivo in the development of the mammalian nervous system is required to advance our knowledge of how PHF6 mutations cause BFLS. Here, we show that PHF6 protein levels are greatly reduced in cells derived from a subset of patients with BFLS. We report the phenotypic, anatomical, cellular and molecular characterization of the brain in males and females in two mouse models of BFLS, namely loss of Phf6 in the germline and nervous system-specific deletion of Phf6. We show that loss of PHF6 resulted in spontaneous seizures occurring via a neural intrinsic mechanism. Histological and morphological analysis revealed a significant enlargement of the lateral ventricles in adult Phf6-deficient mice, while other brain structures and cortical lamination were normal. Phf6 deficient neural precursor cells showed a reduced capacity for self-renewal and increased differentiation into neurons. Phf6 deficient cortical neurons commenced spontaneous neuronal activity prematurely suggesting precocious neuronal maturation. We show that loss of PHF6 in the foetal cortex and isolated cortical neurons predominantly caused upregulation of genes, including Reln, Nr4a2, Slc12a5, Phip and ZIC family transcription factor genes, involved in neural development and function, providing insight into the molecular effects of loss of PHF6 in the developing brain.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC53 artigos no totalmostrando 34

2026

Regulation of physical activity and energy expenditure through Phf6 in the medial preoptic area.

Nature communications
2026

Orofacial clefting in PHF6-related Börjeson-Forssman-Lehmann syndrome.

BMJ case reports
2026

Börjeson-Forssman-Lehmann Syndrome in a Pediatric Patient: A Four-Year Longitudinal Case Report Focused on Functional Evolution and Rehabilitation.

Cureus
2025

Integration of Genome and Epigenetic Testing in the Diagnostic Evaluation of Developmental Delay: Differentiating Börjeson-Forssman-Lehmann (BFLS) and White-Kernohan (WHIKERS) Syndromes.

Genes
2024

Loss of PHF6 causes spontaneous seizures, enlarged brain ventricles and altered transcription in the cortex of a mouse model of the Börjeson-Forssman-Lehmann intellectual disability syndrome.

PLoS genetics
2024

The detection of a strong episignature for Chung-Jansen syndrome, partially overlapping with Börjeson-Forssman-Lehmann and White-Kernohan syndromes.

Human genetics
2024

PHF6-mediated transcriptional control of NSC via Ephrin receptors is impaired in the intellectual disability syndrome BFLS.

EMBO reports
2023

Borjeson-Forssman-Lehmann Syndrome: Clinical Features and Diagnostic Challenges.

Brain &amp; NeuroRehabilitation
2023

Börjeson-Forssman-Lehmann syndrome: delineating the clinical and allelic spectrum in 14 new families.

European journal of human genetics : EJHG
2023

Börjeson-Forssman-Lehmann syndrome: A case report.

Zhong nan da xue xue bao. Yi xue ban = Journal of Central South University. Medical sciences
2023

The Role of PHF6 in Hematopoiesis and Hematologic Malignancies.

Stem cell reviews and reports
2022

PHF6 functions as a tumor suppressor by recruiting methyltransferase SUV39H1 to nucleolar region and offers a novel therapeutic target for PHF6-muntant leukemia.

Acta pharmaceutica Sinica. B
2022

Further characterization of Borjeson-Forssman-Lehmann syndrome in females due to de novo variants in PHF6.

Clinical genetics
2021

X Chromosome Inactivation Pattern and Pregnancy Outcome of Female Carriers of Pathogenic Heterozygous X-Linked Deletions.

Frontiers in genetics
2021

Sensorineural Hearing Loss and Mitochondrial Apoptosis of Cochlear Spiral Ganglion Neurons in Fibroblast Growth Factor 13 Knockout Mice.

Frontiers in cellular neuroscience
2021

A case report of PHF6 mosaicism: Beyond the classic Börjeson-Forssman-Lehmann syndrome.

Pediatric dermatology
2021

[A case of Börjeson-Forssman-Lehmann syndrome caused by PHF6 gene mutation].

Zhonghua er ke za zhi = Chinese journal of pediatrics
2021

Transgenic mice with an R342X mutation in Phf6 display clinical features of Börjeson-Forssman-Lehmann Syndrome.

Human molecular genetics
2020

Loss of PHF6 leads to aberrant development of human neuron-like cells.

Scientific reports
2020

Downregulation of the GHRH/GH/IGF1 axis in a mouse model of Börjeson-Forssman-Lehman syndrome.

Development (Cambridge, England)
2020

A Novel Missense Variant in PHF6 Gene Causing Börjeson-Forssman-Lehman Syndrome.

Journal of molecular neuroscience : MN
2020

Chromatin-Binding Protein PHF6 Regulates Activity-Dependent Transcriptional Networks to Promote Hunger Response.

Cell reports
2020

PHF6 promotes non-homologous end joining and G2 checkpoint recovery.

EMBO reports
2019

Phf6-null hematopoietic stem cells have enhanced self-renewal capacity and oncogenic potentials.

Blood advances
2019

Downregulation of PHF6 Inhibits Cell Proliferation and Migration in Hepatocellular Carcinoma.

Cancer biotherapy &amp; radiopharmaceuticals
2019

A Novel Nonsense Mutation of PHF6 in a Female with Extended Phenotypes of Borjeson-Forssman-Lehmann Syndrome.

Journal of clinical research in pediatric endocrinology
2019

The depletion of PHF6 decreases the drug sensitivity of T-cell acute lymphoblastic leukemia to prednisolone.

Biomedicine &amp; pharmacotherapy = Biomedecine &amp; pharmacotherapie
2018

Characterization of a Mouse Model of Börjeson-Forssman-Lehmann Syndrome.

Cell reports
2017

Central nervous system anomalies in two females with Borjeson-Forssman-Lehmann syndrome.

Epilepsy &amp; behavior : E&amp;B
2016

Pathogenesis of Börjeson-Forssman-Lehmann syndrome: Insights from PHF6 function.

Neurobiology of disease
2016

The sub-nucleolar localization of PHF6 defines its role in rDNA transcription and early processing events.

European journal of human genetics : EJHG
2016

1H, 13C and 15N resonance assignments and secondary structure of the human PHF6-ePHD1 domain.

Biomolecular NMR assignments
2015

Structural basis of plant homeodomain finger 6 (PHF6) recognition by the retinoblastoma binding protein 4 (RBBP4) component of the nucleosome remodeling and deacetylase (NuRD) complex.

The Journal of biological chemistry
2015

miR-128 regulates neuronal migration, outgrowth and intrinsic excitability via the intellectual disability gene Phf6.

eLife
Ver todos os 53 no EuropePMC

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

Referências e fontes

Bases de dados externas citadas neste artigo

Publicações científicas

Artigos indexados no PubMed ligados a esta doença no grafo RarasNet — título, periódico e PMID direto da fonte, sem intermediação de IA.

  1. Regulation of physical activity and energy expenditure through Phf6 in the medial preoptic area.
    Nature communications· 2026· PMID 41876547mais citado
  2. Orofacial clefting in PHF6-related B&#xf6;rjeson-Forssman-Lehmann syndrome.
    BMJ case reports· 2026· PMID 41741118mais citado
  3. B&#xf6;rjeson-Forssman-Lehmann Syndrome in a Pediatric Patient: A Four-Year Longitudinal Case Report Focused on Functional Evolution and Rehabilitation.
    Cureus· 2026· PMID 41694865mais citado
  4. Integration of Genome and Epigenetic Testing in the Diagnostic Evaluation of Developmental Delay: Differentiating B&#xf6;rjeson-Forssman-Lehmann (BFLS) and White-Kernohan (WHIKERS) Syndromes.
    Genes· 2025· PMID 40869981mais citado
  5. Loss of PHF6 causes spontaneous seizures, enlarged brain ventricles and altered transcription in the cortex of a mouse model of the B&#xf6;rjeson-Forssman-Lehmann intellectual disability syndrome.
    PLoS genetics· 2024· PMID 39405291mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:127(Orphanet)
  2. OMIM OMIM:301900(OMIM)
  3. MONDO:0010537(MONDO)
  4. GARD:936(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q1019940(Wikidata)

Dados compilados pelo RarasNet a partir de fontes abertas (Orphanet, OMIM, MONDO, PubMed/EuropePMC, ClinicalTrials.gov, DATASUS, PCDT/MS). Este conteúdo é informativo e não substitui avaliação médica.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Síndrome Borjeson-Forssman-Lehmann
Compêndio · Raras BR

Síndrome Borjeson-Forssman-Lehmann

ORPHA:127 · MONDO:0010537
🇧🇷 Brasil SUS
Triagem
qPCR para deleção de SMN1 em sangue seco
PNTN
Fase 5
Incidência BR
1:10.000
Geral
Prevalência
<1 / 1 000 000
Casos
50 casos conhecidos
Herança
X-linked recessive
CID-10
Q87.8 · Outras síndromes com malformações congênitas especificadas, não classificadas em outra parte
CID-11
Início
Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0265339
EuropePMC
Wikidata
Papers 10a
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