Rare diabetes mellitus type 2

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2Active trials3Specialists8Treatment centers

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

Rare diabetes mellitus type 2 (also sometimes referred to as rare forms of type 2 diabetes or monogenic forms mimicking type 2 diabetes) is an uncommon form of diabetes that shares features with the more common type 2 diabetes but has distinct genetic causes. Unlike typical type 2 diabetes, which is driven largely by lifestyle factors and complex genetics, rare diabetes mellitus type 2 involves specific genetic changes that affect how the body produces or uses insulin. Insulin is a hormone that helps your cells take in sugar from the blood for energy. When this process does not work properly, blood sugar levels rise, which over time can damage blood vessels, nerves, kidneys, eyes, and the heart. Symptoms can include increased thirst, frequent urination, unexplained weight changes, fatigue, blurred vision, and slow wound healing. Some patients may also develop skin darkening in body folds (called acanthosis nigricans) or experience tingling and numbness in the hands and feet. Because this is a rare form, it may not respond to standard type 2 diabetes treatments in the expected way, and patients may need specialized care. The treatment landscape includes blood sugar monitoring, dietary management, oral diabetes medications such as metformin, and sometimes insulin therapy. Because the underlying genetic cause can vary, treatment may need to be tailored to the specific genetic defect. Ongoing research is helping to identify more precise therapies for these rare subtypes. Early diagnosis and proper management are important to prevent long-term complications such as kidney disease, vision loss, and cardiovascular problems.

Also known as:

Key symptoms:

Increased thirstFrequent urinationUnexplained fatigue or tirednessBlurred visionSlow healing of cuts and woundsUnexplained weight loss or weight gainTingling or numbness in hands or feetDarkened skin patches in body foldsFrequent infectionsHunger even after eatingDry mouthDifficulty concentrating

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

2 events
Sep 2019Monogenic Diabetes Misdiagnosed as Type 1

McGill University Health Centre/Research Institute of the McGill University Health Centre

TrialRECRUITING
Jun 2019Phenotyping Genetic Risk for Type 2 Diabetes

University of Pennsylvania — NA

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Rare diabetes mellitus type 2.

2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
N/A1 trial
Phenotyping Genetic Risk for Type 2 Diabetes
N/A
Actively Recruiting
PI: Jessica R Wilson, MD, MS (University of Pennsylvania) · Sites: Philadelphia, Pennsylvania; Philadelphia, Pennsylvania · Age: 1070 yrs
Other1 trial
Monogenic Diabetes Misdiagnosed as Type 1
Actively Recruiting
· Sites: Montreal, Quebec · Age: 025 yrs

Specialists

3 foundView all specialists →
TP
Timothy M Frayling (Prof), PhD
Specialist
PI on 1 active trial
JM
Jessica R Wilson, MD, MS
Philadelphia, Pennsylvania
Specialist

Rare Disease Specialist

DM
Daniele o Provenzano, md
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

University of Pennsylvania

📍 Philadelphia, Pennsylvania

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🔬 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

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

Travel Grants

No travel grants are currently matched to Rare diabetes mellitus type 2.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare diabetes mellitus type 2

1 articles
ResearchCLINICALTRIALSMar 30, 2026
Trial Now Recruiting: Caregiving Networks Across Disease Context and the Life Course (NCT05007990)
This study is looking for 2,800 people to help researchers understand how being a caregiver affects a person's health and stress levels over time. The study inc
See all news about Rare diabetes mellitus type 2

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.Could my diabetes have a specific genetic cause, and should I have genetic testing?,Is my current treatment the best option for my specific type of diabetes?,How often should I monitor my blood sugar, and what are my target levels?,What complications should I watch for, and how often do I need screening tests?,Should my family members be tested for this condition?,Are there any clinical trials or new treatments that might be appropriate for me?,What should I do if my blood sugar drops very low or goes very high?

Common questions about Rare diabetes mellitus type 2

What is Rare diabetes mellitus type 2?

Rare diabetes mellitus type 2 (also sometimes referred to as rare forms of type 2 diabetes or monogenic forms mimicking type 2 diabetes) is an uncommon form of diabetes that shares features with the more common type 2 diabetes but has distinct genetic causes. Unlike typical type 2 diabetes, which is driven largely by lifestyle factors and complex genetics, rare diabetes mellitus type 2 involves specific genetic changes that affect how the body produces or uses insulin. Insulin is a hormone that helps your cells take in sugar from the blood for energy. When this process does not work properly,

Are there clinical trials for Rare diabetes mellitus type 2?

Yes — 2 recruiting clinical trials are currently listed for Rare diabetes mellitus type 2 on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Rare diabetes mellitus type 2?

3 specialists and care centers treating Rare diabetes mellitus type 2 are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.