ALECT2 amyloidosis

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3Specialists8Treatment centers

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Overview

ALECT2 amyloidosis is a rare condition in which an abnormal protein called leukocyte chemotactic factor 2 (LECT2) builds up in organs, especially the kidneys and liver. This protein folds incorrectly and forms clumps called amyloid deposits that gradually damage these organs over time. The disease is also known as ALECT2 amyloid or leukocyte chemotactic factor 2 amyloidosis. It is now recognized as one of the more common types of kidney (renal) amyloidosis in certain populations. The most common way ALECT2 amyloidosis is discovered is when a person develops chronic kidney disease that slowly gets worse. Many patients have protein in their urine and declining kidney function. The liver can also be affected, sometimes showing up as mildly abnormal liver tests or an enlarged liver, though liver involvement often causes no symptoms. Some patients may not have any noticeable symptoms until the disease is fairly advanced. Currently, there is no specific cure or targeted treatment for ALECT2 amyloidosis. Treatment focuses on managing kidney disease and its complications, including controlling blood pressure, reducing protein loss in the urine, and eventually kidney dialysis or transplantation if kidney failure occurs. Research is ongoing to better understand this condition and develop new therapies. Unlike some other forms of amyloidosis, ALECT2 amyloidosis tends to progress slowly, and many patients maintain stable kidney function for years before needing more intensive treatment.

Also known as:

Key symptoms:

Slowly worsening kidney functionProtein in the urineSwelling in the legs or anklesHigh blood pressureFatigue and tirednessEnlarged liverMildly abnormal liver blood testsLoss of appetiteUnexplained weight lossNauseaReduced urine output in advanced stages

Clinical phenotype terms (12)— hover any for plain English
Renal amyloidosisHP:0001917Hepatic amyloidosisHP:0012280Pulmonary amyloidosisHP:0033247Abnormality of multiple cell lineages in the bone marrowHP:0012145Amyloid goiterHP:6000815
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Late onset

Begins later in life, typically after age 50

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for ALECT2 amyloidosis.

View clinical trials →

No actively recruiting trials found for ALECT2 amyloidosis at this time.

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

Search ClinicalTrials.gov ↗Join the ALECT2 amyloidosis community →

Specialists

3 foundView all specialists →
JP
Jonathan Wall, Ph.D.
Specialist
PI on 1 active trial
GM
Gregory Bell, MD
Specialist
PI on 1 active trial1 ALECT2 amyloidosis publication
JF
Joshua Friedman
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 ALECT2 amyloidosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about ALECT2 amyloidosis

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Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

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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.What stage is my kidney disease, and how quickly is it progressing?,Should my family members be tested for the LECT2 gene variant?,What dietary changes should I make to protect my kidneys?,How often do I need blood and urine tests to monitor my kidney function?,Am I a candidate for kidney transplantation if my kidneys fail?,Are there any clinical trials or new treatments being studied for ALECT2 amyloidosis?,Should I be checked for amyloid deposits in my liver or other organs?

Common questions about ALECT2 amyloidosis

What is ALECT2 amyloidosis?

ALECT2 amyloidosis is a rare condition in which an abnormal protein called leukocyte chemotactic factor 2 (LECT2) builds up in organs, especially the kidneys and liver. This protein folds incorrectly and forms clumps called amyloid deposits that gradually damage these organs over time. The disease is also known as ALECT2 amyloid or leukocyte chemotactic factor 2 amyloidosis. It is now recognized as one of the more common types of kidney (renal) amyloidosis in certain populations. The most common way ALECT2 amyloidosis is discovered is when a person develops chronic kidney disease that slowly

At what age does ALECT2 amyloidosis typically begin?

Typical onset of ALECT2 amyloidosis is late onset. Age of onset can vary across affected individuals.

Which specialists treat ALECT2 amyloidosis?

3 specialists and care centers treating ALECT2 amyloidosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.