Disorder of fructose metabolism

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ORPHA:308463E74.1
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28Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Disorder of fructose metabolism is a group of inherited conditions where the body cannot properly break down fructose, a type of sugar found in fruits, table sugar, honey, and many processed foods. This group includes three main conditions: essential fructosuria (a harmless condition), hereditary fructose intolerance (HFI), and fructose-1,6-bisphosphatase deficiency. The most well-known and clinically significant form is hereditary fructose intolerance, caused by a deficiency of the enzyme aldolase B in the liver. When a person with HFI eats foods containing fructose, sorbitol, or sucrose, toxic substances build up in the liver, kidneys, and small intestine. This can cause severe symptoms including vomiting, low blood sugar (hypoglycemia), liver damage, kidney problems, and failure to thrive in infants. Symptoms typically appear when babies are first introduced to fruits, juices, or formula containing fructose or sucrose. Fructose-1,6-bisphosphatase deficiency primarily causes problems with the body's ability to make glucose during fasting, leading to dangerous episodes of low blood sugar and a buildup of acid in the blood. The cornerstone of treatment for these conditions is strict avoidance of fructose, sucrose, and sorbitol in the diet. With early diagnosis and proper dietary management, people with fructose metabolism disorders can live healthy lives, but delayed diagnosis can lead to serious liver and kidney damage.

Key symptoms:

Vomiting after eating foods with fructose or sugarLow blood sugar (hypoglycemia)Failure to gain weight or grow properly in infantsLiver enlargementJaundice (yellowing of the skin and eyes)Excessive sweating and tremblingAbdominal pain and bloatingAversion to sweet foods and fruitsLethargy and drowsiness after eating sweetsKidney problemsBleeding or bruising easilySeizures from very low blood sugarChronic liver damage if untreatedNausea and poor feeding in infants

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗NORD ↗

FDA & Trial Timeline

5 events
Oct 2025Ultra-processed Food Reducing Intervention and Continuous Glucose Monitoring

Korea University — NA

TrialNOT YET RECRUITING
Jun 2025Fructose is a Metabolic and Inflammatory Pathogenic Factor in Metabolic Dysfunction-associated Steatohepatitis (MASH)

Queen Mary University of London — NA

TrialRECRUITING
Oct 2024High Fructose Diet, the Gut Microbiome, and Metabolic Health

Icahn School of Medicine at Mount Sinai — NA

TrialRECRUITING
Oct 2024Impact of Different Carbohydrate Feedings on a Hydrogen Breath Curve and Self-reported Gastrointestinal Complaints

Arizona State University — NA

TrialACTIVE NOT RECRUITING
Mar 2024Dietary Fructose: a Metabolic Switch in Pediatric Obesity-related Disease.

Azienda Ospedaliero Universitaria Maggiore della Carita

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Disorder of fructose metabolism.

View clinical trials →

No actively recruiting trials found for Disorder of fructose metabolism at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Disorder of fructose metabolism community →

Specialists

Showing 25 of 28View all specialists →
PM
Peter Komericki, MD
Specialist
PI on 1 active trial
CM
Christian Pongracz, MS
Specialist
PI on 1 active trial
TM
Tappy Luc, MD
Specialist
PI on 1 active trial
FP
Flavia Prodam, MD PHD
Specialist
PI on 1 active trial
LM
Luc Tappy, MD
Specialist
PI on 3 active trials1 Disorder of fructose metabolism publication
JM
Janice Hwang, MD
Specialist
PI on 1 active trial
RW
Ryan Walker
Specialist
PI on 1 active trial33 Disorder of fructose metabolism publications
KP
Kimber L Stanhope, Ph.D.
SHERMAN, TX
Specialist
PI on 2 active trials
SM
Shelby A Sullivan, MD
Specialist
PI on 1 active trial
JM
James M Rippe, MD
CELEBRATION, FL
Specialist
PI on 1 active trial
JP
Jill Kanaley, PhD
Specialist
PI on 2 active trials
LP
Leanne Hodson, PhD
Specialist
PI on 1 active trial
PP
Peter J Havel, DVM, Ph.D
Specialist
PI on 1 active trial
SM
Samuel Klein, MD
Specialist
PI on 1 active trial
LM
Lisa Hudgins, MD
Specialist
PI on 1 active trial1 Disorder of fructose metabolism publication
MM
Magdalena Madero, MD
Specialist
PI on 1 active trial
DS
Débora L Souto
Specialist
PI on 1 active trial
MM
Miriam Vos, Md
GRAND RAPIDS, MI
Specialist
PI on 1 active trial
JF
John L Sievenpiper, MD PhD FRCPC
Specialist
PI on 1 active trial
CM
Camila Manrique Acevedo, MD
WESLEY CHAPEL, FL
Specialist
PI on 1 active trial
SM
Sonia Caprio, M.D.
NEW HAVEN, CT
Specialist
PI on 2 active trials
NP
Nick Bellissimo, PhD
Specialist
PI on 2 active trials
LM
l Tappy, MD
Specialist
PI on 1 active trial1 Disorder of fructose metabolism publication
JP
Jean-Marc Schwarz, Ph.D.
Specialist
PI on 1 active trial
AC
Allison Husband, RN, MN, CDE
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Disorder of fructose metabolism.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Disorder of fructose metabolism

Disease timeline:

New recruiting trial: Dietary Fructose: a Metabolic Switch in Pediatric Obesity-related Disease.

A new clinical trial is recruiting patients for Disorder of fructose metabolism

New recruiting trial: Fructose is a Metabolic and Inflammatory Pathogenic Factor in Metabolic Dysfunction-associated Steatohepatitis (MASH)

A new clinical trial is recruiting patients for Disorder of fructose metabolism

New recruiting trial: High Fructose Diet, the Gut Microbiome, and Metabolic Health

A new clinical trial is recruiting patients for Disorder of fructose metabolism

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Which specific type of fructose metabolism disorder does my child have, and what gene is affected?,Can you refer us to a metabolic dietitian who specializes in this condition?,What foods, drinks, and medications must we strictly avoid?,What should we do if my child accidentally eats something containing fructose?,How often should liver and kidney function be monitored?,Should other family members be tested for this condition or carrier status?,Are there any clinical trials or new treatments being studied for this condition?

Common questions about Disorder of fructose metabolism

What is Disorder of fructose metabolism?

Disorder of fructose metabolism is a group of inherited conditions where the body cannot properly break down fructose, a type of sugar found in fruits, table sugar, honey, and many processed foods. This group includes three main conditions: essential fructosuria (a harmless condition), hereditary fructose intolerance (HFI), and fructose-1,6-bisphosphatase deficiency. The most well-known and clinically significant form is hereditary fructose intolerance, caused by a deficiency of the enzyme aldolase B in the liver. When a person with HFI eats foods containing fructose, sorbitol, or sucrose, tox

How is Disorder of fructose metabolism inherited?

Disorder of fructose metabolism follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Disorder of fructose metabolism typically begin?

Typical onset of Disorder of fructose metabolism is infantile. Age of onset can vary across affected individuals.

Which specialists treat Disorder of fructose metabolism?

25 specialists and care centers treating Disorder of fructose metabolism are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.