Disorder of lipid metabolism

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ORPHA:309005
Who is this for?
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31Specialists8Treatment centers

Where are you in your journey?

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

Disorder of lipid metabolism (Orphanet code 309005) is a broad classification category encompassing a heterogeneous group of rare genetic conditions in which the body's ability to properly synthesize, transport, process, or break down lipids (fats and fat-like substances) is impaired. These disorders can affect multiple organ systems including the liver, cardiovascular system, nervous system, skin, muscles, and adipose tissue. Lipids play essential roles in energy storage, cell membrane structure, hormone production, and signaling, so disruptions in lipid metabolism can have widespread clinical consequences. Clinical manifestations vary widely depending on the specific underlying condition but may include abnormal blood lipid levels (dyslipidemia), hepatomegaly or liver dysfunction, xanthomas (fatty deposits in the skin or tendons), premature atherosclerosis and cardiovascular disease, neurological deterioration, failure to thrive, and metabolic crises. Some disorders within this group present in infancy or childhood, while others may not become apparent until adulthood. As this is a grouping category rather than a single disease entity, treatment approaches are highly variable and depend on the specific diagnosis. Management strategies may include dietary modifications (such as fat restriction or supplementation with specific fatty acids), lipid-lowering medications, enzyme replacement therapy for certain lysosomal storage disorders, liver transplantation, and supportive care. Genetic testing and biochemical analysis are essential for establishing a precise diagnosis within this broad category, which then guides appropriate management and genetic counseling.

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jun 2026LLM-CoManage: Large Language Model-Enabled Co-Management of Hypertension, Diabetes, and Dyslipidemia

First Hospital of China Medical University — NA

TrialNOT YET RECRUITING
May 2026Implementation Facilitation of Exercise is Medicine Greenville

University of South Carolina — NA

TrialNOT YET RECRUITING
Apr 2026A Study to Evaluate the Safety, Efficacy of SYH2053 as Monotherapy in Chinese Participants With Non-familial Hypercholesterolemia or Mixed Hyperlipidemia

CSPC Zhongnuo Pharmaceutical (Shijiazhuang) Co., Ltd. — PHASE3

TrialNOT YET RECRUITING
Jan 2026A Novel Digital Tool Physicians Can Use to Prescribe Exercise to Patients With Cardiovascular Disease Risk Factors

University of Connecticut — NA

TrialRECRUITING
Jan 2026Dual vs Triple Lipid-Lowering Therapy in Type 2 Diabetes Mellitus Patients With Elevated LDL Cholesterol

Bahria University — PHASE4

TrialNOT YET RECRUITING
Dec 2025Study of ARO-DIMERPA in Adult Participants With Mixed Hyperlipidemia

Arrowhead Pharmaceuticals — PHASE1, PHASE2

TrialRECRUITING
Dec 2025Activate Tennessee: A CHW-Supported Program for Patient Activation

Meharry Medical College — NA

TrialNOT YET RECRUITING
Nov 2025A Study to Evaluate COR-1004 in Adult Volunteers.

Corsera Health — PHASE1

TrialRECRUITING
Sep 2025A Mechanistic Study of MAR001 in Adults With Elevated Triglycerides and Remnant Cholesterol

Marea Therapeutics — PHASE2

TrialRECRUITING
Sep 2025"Smart Family Doctor" Assisted Comprehensive Management of Secondary Prevention Among Post Coronary Artery Bypass Graft Patients or Post Percutaneous Coronary Intervention Patients

China National Center for Cardiovascular Diseases — NA

TrialRECRUITING

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

Treatments

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

View clinical trials →

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

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

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

Specialists

Showing 25 of 31View all specialists →
TM
Tippi C MacKenzie, MD
San Francisco, California
Specialist

Rare Disease Specialist

PI on 2 active trials
AM
AstraZeneca Crestor Medical Sciences Director, MD
Specialist
PI on 2 active trials1 Disorder of lipid metabolism publication
WP
William T Cade, PT, PhD
HARKER HEIGHTS, TX
Specialist
PI on 5 active trials
XC
Xiaosong Chen
Specialist
PI on 1 active trial996 Disorder of lipid metabolism publications
RM
Ruthie Amir, MD
Specialist
PI on 4 active trials
ZM
Zhaoping Li, MD
LOS ANGELES, CA
Specialist
PI on 1 active trial
JP
Joshua R Cook, MD, PhD
Specialist
PI on 5 active trials
VM
Victor M. Montori, M.D.
ROCHESTER, MN
Specialist
PI on 2 active trials
DM
Dragos Budinski, MD
Specialist
PI on 1 active trial
JD
James McKenney, Pharm D
Specialist
PI on 1 active trial
MM
Michael Davidson, MD
Specialist
PI on 1 active trial
BM
Barry Lubin, MD
ATLANTA, GA
Specialist
PI on 1 active trial
JM
Jean-Claude Tardif, MD
Specialist
PI on 3 active trials
PM
Paul Grena, MD
YARDLEY, PA
Specialist
PI on 1 active trial
AP
Abbas Nouroozi, Ph.D
Specialist
PI on 1 active trial
JM
Jackson Downey, MD
Specialist
PI on 1 active trial
EM
Eli Roth, MD
Specialist
PI on 1 active trial
JP
Jackilen Shannon, PhD
Specialist
PI on 5 active trials
PP
Plamen D Penev, MD, PhD
BURR RIDGE, IL
Specialist
PI on 4 active trials
JP
Jamie A Cooper, Ph.D.
Specialist
PI on 1 active trial
OP
Oxana M Drapkina, MD, PhD
Specialist
PI on 1 active trial
KM
Kitt Petersen, MD
Specialist
PI on 1 active trial
GM
Gail L Daumit, MD
BALTIMORE, MD
Specialist
PI on 1 active trial1 Disorder of lipid metabolism publication

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 lipid metabolism.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Disorder of lipid metabolism

Disease timeline:

New recruiting trial: Heart CT Imaging to Detect Early Coronary Artery Disease in First-Degree Relatives With High or Low Lipoprotein(a) Identified Through Family Screening

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

New recruiting trial: Clinical Management of Cardiovascular Risk Factors in Adult Patients: A Before-and-After Interventional Study

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

New recruiting trial: EAS Familial Hypercholesterolaemia Studies Collaboration

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

New recruiting trial: Comparison of Intensive Versus Standard Care & Education for Dyslipidemia in Hypertension and Diabetes Patients

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

New recruiting trial: A Novel Digital Tool Physicians Can Use to Prescribe Exercise to Patients With Cardiovascular Disease Risk Factors

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

New recruiting trial: Clinical Decision Support for Familial Hypercholesterolemia

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

New recruiting trial: Effects of Phytoestrogen From Pueraria Mirifica in Improvement of Serum Lipid Parameters in Postmenopausal Women

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

New recruiting trial: Ezetimibe Utilization Early After Acute Myocardial Infarction, "EzAMI Trial"

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

New recruiting trial: A Study to Evaluate COR-1004 in Adult Volunteers.

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

New recruiting trial: Evaluation of Milk Polar Lipids in Dyslipidemic Adults With Abdominal Obesity

A new clinical trial is recruiting patients for Disorder of lipid 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.

Common questions about Disorder of lipid metabolism

What is Disorder of lipid metabolism?

Disorder of lipid metabolism (Orphanet code 309005) is a broad classification category encompassing a heterogeneous group of rare genetic conditions in which the body's ability to properly synthesize, transport, process, or break down lipids (fats and fat-like substances) is impaired. These disorders can affect multiple organ systems including the liver, cardiovascular system, nervous system, skin, muscles, and adipose tissue. Lipids play essential roles in energy storage, cell membrane structure, hormone production, and signaling, so disruptions in lipid metabolism can have widespread clinica

Which specialists treat Disorder of lipid metabolism?

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