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Raquitismo hipofosfatêmico com hipercalciúria
ORPHA:157215CID-10 · E83.3CID-11 · 5C63.22OMIM 241530DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Sistema ósseoInício infânciaHerança AD/AR
Também conhecida comoHHRH

O raquitismo hipofosfatêmico hereditário com hipercalciúria (HHRH) é um distúrbio renal hereditário de perda de fosfato caracterizado por hipofosfatemia e hipercalciúria associada ao raquitismo e/ou osteomalácia.

Última verificação: Fonte: não verificado (1 pendência)Em construçãohistóricoSugerir correção
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Introdução

O que você precisa saber de cara

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EM LINGUAGEM SIMPLES

O raquitismo hipofosfatêmico com hipercalciúria (HHRH) é uma condição genética rara em que os rins eliminam muito fósforo e muito cálcio pela urina. Essa perda contínua enfraquece o esqueleto, provocando dores ósseas, pernas arqueadas, atraso no crescimento e formação de pedras nos rins. Embora a doença não tenha uma diretriz exclusiva no Ministério da Saúde, o SUS dispensa medicamentos para distúrbios ósseos no protocolo de Raquitismo e Osteomalácia. O acompanhamento com equipe médica ajuda a monitorar os ossos e a função dos rins ao longo do desenvolvimento da criança.

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Informacoes curadas por IA — podem conter imprecisoes

O raquitismo hipofosfatêmico hereditário com hipercalciúria (HHRH) é um distúrbio renal hereditário de perda de fosfato caracterizado por hipofosfatemia e hipercalciúria associada ao raquitismo e/ou osteomalácia.

Pesquisas ativas
1 ensaio
1 total registrados no ClinicalTrials.gov
Publicações científicas
86 artigos
Último publicado: 2026 Mar 18
Medicamentos
1 com registro
Burosumabe

Tem tratamento?

✓ 1 medicamento específico desta doença (registro ANVISA, FDA ou SUS/CEAF)
Ver detalhes, fases e interações →
BUROSUMABE

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
Europe
Início
Childhood
+ infancy
🏥
SUS: Sem cobertura SUSScore: 0%
1 medicamento CEAFCID-10: E83.3
Você se identifica com essa condição?
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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
14 sintomas
🫘
Rins
5 sintomas
📏
Crescimento
4 sintomas
🧠
Neurológico
1 sintomas
💪
Músculos
1 sintomas

+ 27 sintomas em outras categorias

Características mais comuns

100%prev.
Hipercalciúria
Frequência: 5/5
100%prev.
Hipofosfatemia
Frequência: 7/7
100%prev.
Raquitismo hipofosfatêmico
Frequência: 7/7
100%prev.
Perda renal de fosfato
Frequência: 4/4
100%prev.
Concentração elevada de fosfatase alcalina circulante
Frequência: 7/7
90%prev.
Hiperfosfatúria
Muito frequente (99-80%)
52sintomas
Muito frequente (10)
Frequente (8)
Ocasional (5)
Muito raro (2)
Sem dados (27)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 52 características clínicas mais associadas, ordenadas por frequência.

HipercalciúriaHypercalciuria
Frequência: 5/5100%
HipofosfatemiaHypophosphatemia
Frequência: 7/7100%
Raquitismo hipofosfatêmicoHypophosphatemic rickets
Frequência: 7/7100%
Perda renal de fosfatoRenal phosphate wasting
Frequência: 4/4100%
Concentração elevada de fosfatase alcalina circulanteElevated circulating alkaline phosphatase concentration
Frequência: 7/7100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico86PubMed
Últimos 10 anos36publicações
Pico20196 papers
Linha do tempo
2026Hoje · 2026🧪 2019Primeiro ensaio clínico📈 2019Ano de pico
Publicações por ano (últimos 10 anos)

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

2 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Autosomal recessive.

Curadoria gene-doença

fontes oficiais
SLC34A3
SLC34A3Sodium-dependent phosphate transport protein 2CDisease-causing germline mutation(s) (loss of function) inTolerante
VIAS BIOLÓGICAS (1)
Type II Na+/Pi cotransporters
MECANISMO DE DOENÇA

Hereditary hypophosphatemic rickets with hypercalciuria

Autosomal recessive form of hypophosphatemia characterized by reduced renal phosphate reabsorption and rickets. Increased serum levels of 1,25-dihydroxyvitamin D lead to increase in urinary calcium excretion.

EXPRESSÃO TECIDUAL(Tecido-específico)
Rim - Córtex
9.1 TPM
Pituitária
4.6 TPM
Esôfago - Mucosa
3.8 TPM
Rim - Medula
2.8 TPM
Testículo
1.4 TPM
OUTRAS DOENÇAS (1)
hereditary hypophosphatemic rickets with hypercalciuria
HGNC:20305UniProt:Q8N130
SLC34A1Sodium-dependent phosphate transport protein 2ADisease-causing germline mutation(s) inTolerante
VIAS BIOLÓGICAS (2)
Surfactant metabolismType II Na+/Pi cotransporters
MECANISMO DE DOENÇA

Nephrolithiasis/osteoporosis, hypophosphatemic, 1

A disease characterized by decreased renal phosphate absorption, renal phosphate wasting, hypophosphatemia, hyperphosphaturia, hypercalciuria, nephrolithiasis and osteoporosis.

EXPRESSÃO TECIDUAL(Tecido-específico)
Rim - Córtex
35.5 TPM
Rim - Medula
19.9 TPM
Fígado
0.6 TPM
Esôfago - Mucosa
0.3 TPM
Skin Not Sun Exposed Suprapubic
0.2 TPM
OUTRAS DOENÇAS (7)
hypophosphatemic nephrolithiasis/osteoporosis 1hypercalcemia, infantile, 2Fanconi renotubular syndrome 2obsolete dominant hypophosphatemia with nephrolithiasis or osteoporosis
HGNC:11019UniProt:Q06495

Variantes genéticas (ClinVar)

430 variantes patogênicas registradas no ClinVar.

🧬 SLC34A3: NM_001177316.2(SLC34A3):c.1211-1G>A ()
🧬 SLC34A3: NM_001177316.2(SLC34A3):c.175+1G>A ()
🧬 SLC34A3: GRCh38/hg38 9q34.3(chr9:135445565-138172039)x1 ()
🧬 SLC34A3: NM_001177316.2(SLC34A3):c.1336-1G>A ()
🧬 SLC34A3: NM_001177316.2(SLC34A3):c.926-1G>A ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
1Fase 11
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Raquitismo hipofosfatêmico com hipercalciúria

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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

Onde estão os ensaios

Com ensaio aberto em 1 país. O ponto verde marca onde há vaga agora.

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1 pesquisa recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

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Publicações mais relevantes

Timeline de publicações
36 papers (10 anos)
#1

Composite Phenotype: Recurrent Nephrolithiasis and Chronic Kidney Disease in an Adult with Biallelic SLC34A3 and Monoallelic SLC3A1 Pathogenic Variants: Who is 'The Culprit'?

Kidney &amp; blood pressure research2026 Mar 18

Kidney stones are common and can arise from many etiologies including genetic and environmental. Biallelic pathogenic variants in the solute carrier family 34-member 3 (SLC34A3) gene cause Hereditary Hypophosphatemic Rickets with Hypercalciuria (HHRH), while both monallaelic and biallelic pathogenic variants in SLC3A1 cause cystinuria. Here, we report the clinical phenotype of a patient with concomitant biallelic and monoallelic pathogenic variants in SLC34A3 and SLC3A1 respectively.

#2

Identification of a Novel Homozygous SLC34A1 Missense Mutation and a Heterozygous SLC34A3 Deletion in an Infant with Nephrocalcinosis, Failure to Thrive, and Hypercalcemia.

International journal of molecular sciences2025 Sep 02

Renal phosphate transporters NaPi-IIa (SLC34A1) and NaPi-IIc (SLC34A3) play a crucial role in phosphate reabsorption in the proximal tubule. Biallelic loss-of-function variants in SLC34A1 and SLC34A3 cause two rare phosphate-wasting tubulopathies: idiopathic infantile hypercalcemia (IIH) and hereditary hypophosphatemic rickets with hypercalciuria, respectively. The phenotypes associated with these diseases are highly variable and sometimes overlap. Here, we report a rare case of a six-month-old girl of consanguineous parents with symptoms related to these diseases, including failure to thrive, nephrocalcinosis, hypercalcemia, hypophosphatemia with low TRP, elevated levels of 1,25-(OH)2D3, and suppressed PTH. An exome sequencing analysis was carried out to determine the genetic variants associated with her disease. Bioinformatics tools were used to assess variant pathogenicity. We identify a novel homozygous mutation in the SLC34A1 gene, c.1361C>T; p.(T454M), and a previously described heterozygous SLC34A3 101 bp deletion. Mutation p.(T454M) affects transmembrane domain 5 of the NaPi-IIa protein, which is involved in substrate binding, probably impairing phosphate transport. Our results suggest the diagnosis of IIH type 2 in our patient and highlight the importance of exome analysis in diagnosing these tubulopathies. We suggest that the coexistent heterozygous SLC34A3 deletion could increase the risk of renal calcifications and the severity of other symptoms.

#3

Hereditary Hypophosphatemic Rickets with Hypercalciuria - Importance of Further Evaluation If Clinical Suspicion is Strong.

Journal of clinical research in pediatric endocrinology2025 Aug 18

Hereditaryhypophosphatemic rickets with hypercalciuria ( HHRH) is a rare genetic condition with Autosomal recessive inheritance with a prevalence of 1 in 250000. It is due to mutation in SLC4A3 gene. Correct diagnosis of this condition is important as treatment with active vitamin D metabolites are contraindicated. Evolution of the disease despite initial completely normal bio chemistry has ben observed causing diagnostic confusion. First child presented at the age of 5.5 year with features of rickets. He had abnormal bone profile with normal vitamin D levels. urinary phosphate studies were compatible with HHRH. He was treated with phosphate supplementation and Potassium citrate. He has well responded to the treatment. Second child initially presented at 1.5 years of age with bowing and family history of hypercalciuria. All investigation findings including urinary phosphate studies were within normal limits. At the age of 2.5 year, he again presented with worsening of bowing. Bio chemical and urinary investigations were repeated. Laboratory findings were compatible with HHRH. It highlights the importance of repeated investigations despite initial normal parameters if the initial clinical suspicion is strong and clinical and investigation based diagnosis of this rare genetic disease in resource limited setting.

#4

Unexpected SLC34A3 rickets in a case of suspected distal myopathy.

Pediatric nephrology (Berlin, Germany)2025 Dec

Hereditary hypophosphatemic rickets with hypercalciuria (HHRH), caused by SLC34A3 gene mutations, is characterized by hypophosphatemia, hypercalciuria, and low PTH levels. While rickets and skeletal deformities are common, HHRH also poses a significant risk for chronic kidney disease (CKD) due to nephrocalcinosis and recurrent kidney stones. Here, we describe a patient with mild skeletal deformities, who was diagnosed with HHRH during adolescence after undergoing whole genome sequencing (WGS) for suspected myopathy. Despite hypophosphatemia and low PTH, the patient had normal calcium levels and no nephrocalcinosis or kidney stones. X-rays showed mild metaphyseal changes consistent with rickets. While muscle weakness and pain are noted in X-linked hypophosphatemic rickets, neurological symptoms in HHRH tend to be milder. We present a patient with an unexpected homozygous likely pathogenic variant in the SLC34A3 gene. This case underscores the importance of distinguishing between skeletal, nephrological, and neurological conditions for accurate diagnosis, effective treatment, and genetic counseling.

#5

Novel Variant of SLC34A3 in a Compound Heterozygous Brazilian Girl with Hereditary Hypophosphatemic Rickets with Hypercalciuria.

Journal of clinical research in pediatric endocrinology2025 Aug 22

Hereditary hypophosphatemic rickets with hypercalciuria (HHRH) is a rare fibroblast growth factor-23-independent disorder caused by biallelic variants in the SLC34A3 gene. The disease severity varies, and patients have an increased risk of developing renal complications. Phosphate supplementation is the standard of care and active vitamin D analogs are not indicated as they could worsen the hypercalciuria. We report a Brazilian girl with HHRH who presented with knee pain and progressive genu valgum deformity that became apparent from the age of eight years onwards. Nephrocalcinosis was also identified at age 13 years. Targeted next-generation sequencing for hereditary forms of rickets detected compound heterozygous pathogenic variants in SLC34A3, including a novel missense variant c.1217G>T (p.Gly406Val). Compliance to oral phosphorus therapy was suboptimal and adjunctive chlorthalidone therapy improved hypercalciuria. This report highlights the phenotypic variability and also expands the list of SLC34A3 variants associated with HHRH. An accurate diagnosis is key for optimal treatment. Of note, thiazide diuretics may be useful as adjunctive therapy for controlling hypercalciuria.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC37 artigos no totalmostrando 35

2026

Composite Phenotype: Recurrent Nephrolithiasis and Chronic Kidney Disease in an Adult with Biallelic SLC34A3 and Monoallelic SLC3A1 Pathogenic Variants: Who is 'The Culprit'?

Kidney &amp; blood pressure research
2025

Identification of a Novel Homozygous SLC34A1 Missense Mutation and a Heterozygous SLC34A3 Deletion in an Infant with Nephrocalcinosis, Failure to Thrive, and Hypercalcemia.

International journal of molecular sciences
2025

Hereditary Hypophosphatemic Rickets with Hypercalciuria - Importance of Further Evaluation If Clinical Suspicion is Strong.

Journal of clinical research in pediatric endocrinology
2025

Unexpected SLC34A3 rickets in a case of suspected distal myopathy.

Pediatric nephrology (Berlin, Germany)
2025

Newly identified intronic and known pathogenic point mutations in SLC34A3/NPT2c cause hereditary hypophosphatemic rickets with hypercalciuria.

Genes &amp; diseases
2024

Hereditary hypophosphatemic rickets with hypercalciuria (HHRH), a complex disorder in need of precision medicine.

Kidney international
2024

An update on clinical presentation and responses to therapy of patients with hereditary hypophosphatemic rickets with hypercalciuria (HHRH).

Kidney international
2024

Family analysis and literature study of hereditary hypophosphatemic rickets with hypercalciuria.

BMC pediatrics
2024

Hereditary Hypophosphatemic Rickets with Hypercalciuria Presenting with Enthesopathy, Renal Cysts, and High Serum c-Terminal FGF23: Single-Center Experience and Systematic Review.

Calcified tissue international
2023

Genu Valgum, Fractures, and Renal Stones in a 10-year-old Girl.

JCEM case reports
2025

Novel Variant of SLC34A3 in a Compound Heterozygous Brazilian Girl with Hereditary Hypophosphatemic Rickets with Hypercalciuria.

Journal of clinical research in pediatric endocrinology
2023

Research progress on renal calculus associate with inborn error of metabolism.

Zhejiang da xue xue bao. Yi xue ban = Journal of Zhejiang University. Medical sciences
2022

SLC34A3 GENE MUTATION AS A RARE CAUSE OF HYPOPHOSPHATEMIA IN TWO SIBLINGS.

Acta endocrinologica (Bucharest, Romania : 2005)
2023

Relationship between clinical phenotype and in vitro analysis of 13 NPT2c/SCL34A3 mutants.

Scientific reports
2024

Pharmacology of Mammalian Na+-Dependent Transporters of Inorganic Phosphate.

Handbook of experimental pharmacology
2022

Monogenic urinary lithiasis in Tunisian children: 25 years' experience of a referral center.

La Tunisie medicale
2022

Clinical Spectrum of Hereditary Hypophosphatemic Rickets With Hypercalciuria (HHRH).

Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research
2022

Growth hormone therapy in HHRH.

Bone reports
2022

Kidney Cysts in Hypophosphatemic Rickets With Hypercalciuria: A Case Series.

Kidney medicine
2021

Variable Clinical Presentation of Children with Hereditary Hypophosphatemic Rickets with Hypercalciuria: A Case Series and Review of the Literature.

Hormone research in paediatrics
2020

Description of a novel SLC34A3.c.671delT mutation causing hereditary hypophosphatemic rickets with hypercalciuria in two adolescent boys and response to recombinant human growth hormone.

Therapeutic advances in musculoskeletal disease
2020

Hereditary Hypophosphatemic Rickets with Hypercalciuria (HHRH) Presenting with Genu Valgum Deformity: Treatment with Phosphate Supplementation and Surgical Correction.

Case reports in endocrinology
2020

[Clinical feature and variant analysis of a case with hereditary hypophosphatemic rickets with hypercalciuria].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2020

Digenic Heterozygous Mutations in SLC34A3 and SLC34A1 Cause Dominant Hypophosphatemic Rickets with Hypercalciuria.

The Journal of clinical endocrinology and metabolism
2020

Role of sodium-dependent Pi transporter/Npt2c on Pi homeostasis in klotho knockout mice different properties between juvenile and adult stages.

Physiological reports
2019

Description of 5 Novel SLC34A3/NPT2c Mutations Causing Hereditary Hypophosphatemic Rickets With Hypercalciuria.

Kidney international reports
2019

Phosphate matters when investigating hypercalcemia: a mutation in SLC34A3 causing HHRH.

Endocrinology, diabetes &amp; metabolism case reports
2019

Evaluating pathogenicity of SLC34A3-Ser192Leu, a frequent European missense variant in disorders of renal phosphate wasting.

Urolithiasis
2019

Analysis of opossum kidney NaPi-IIc sodium-dependent phosphate transporter to understand Pi handling in human kidney.

Clinical and experimental nephrology
2019

Hereditary hypophosphatemic rickets with hypercalciuria: pathophysiology, clinical presentation, diagnosis and therapy.

Pflugers Archiv : European journal of physiology
2018

SLC34A3 Intronic Deletion in an Iranian Kindred with Hereditary Hypophosphatemic Rickets with Hypercalciuria.

Journal of clinical research in pediatric endocrinology
2019

Renal phosphate handling and inherited disorders of phosphate reabsorption: an update.

Pediatric nephrology (Berlin, Germany)
2017

Late-onset hereditary hypophosphatemic rickets with hypercalciuria (HHRH) due to mutation of SLC34A3/NPT2c.

Bone
2015

The Role of Sodium-Dependent Phosphate Transporter in Phosphate Homeostasis.

Journal of nutritional science and vitaminology
2015

Relationship between sodium-dependent phosphate transporter (NaPi-IIc) function and cellular vacuole formation in opossum kidney cells.

The journal of medical investigation : JMI
Ver todos os 37 no EuropePMC

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Doença com base genética

Um médico geneticista pode ajudar no diagnóstico de Raquitismo hipofosfatêmico com hipercalciúria e no aconselhamento genético da família.

Vai consultar um especialista? Confirme o registro dele no conselho.
Conselhos e sociedades

Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Perguntas frequentes

O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu

Respostas geradas por IA a partir das fontes citadas

A doença é causada por alterações genéticas que prejudicam a retenção renal de fosfato, principalmente mutações nos genes SLC34A3 e SLC34A1. A transmissão pode ocorrer de forma autossômica recessiva ou autossômica dominante.

Referências

Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete

6 publicações do grafo RarasNet (PubMed) · 7 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. ORPHA:157215
    Orphanet
  2. GARD:16977
    GARD (NIH)
  3. Q21097763
    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.

Citar este verbete

Raras. (s.d.). Raquitismo hipofosfatêmico com hipercalciúria. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/raquitismo-hipofosfatemico-com-hipercalciuria

Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Compêndio · Raras BR

Raquitismo hipofosfatêmico com hipercalciúria

ORPHA:157215 · MONDO:0009431
🇧🇷 Brasil SUS
CEAF
1ABurosumabe
Geral
Prevalência
<1 / 1 000 000
Herança
Autosomal dominant, Autosomal recessive
CID-10
E83.3 · Distúrbios do metabolismo do fósforo
CID-11
Ensaios
1 ativos
Início
Childhood, Infancy
Prevalência
0.0 (Europe)
MedGen
UMLS
C0342645
Repurposing
2 candidatos
dihydrotachysterol — vitamin analog
ergocalciferol
EuropePMC
Wikidata
Papers 10a

📋 Origem dos dados

Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.

Doença rara (ontologia)
fonte: Orphanet
Identificador unificado
fonte: MONDO
Genética mendeliana
fonte: OMIM
Indexação biomédica
fonte: MeSH (NLM)
Dado público estruturado
fonte: Wikidata
Rara