Primary lipodystrophy

Last reviewed

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ORPHA:90970
Who is this for?
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6Specialists8Treatment 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

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Primary lipodystrophy.

View clinical trials →

No actively recruiting trials found for Primary lipodystrophy at this time.

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

Search ClinicalTrials.gov ↗Join the Primary lipodystrophy community →

Specialists

6 foundView all specialists →
LM
Leslie A Spikes, MD
KANSAS CITY, KS
Specialist
PI on 1 active trial1 Primary lipodystrophy publication
LM
Lisa Mielniczuk, MD
ROCHESTER, MN
Specialist
PI on 1 active trial1 Primary lipodystrophy publication
JM
John Koethe, MD
PHILADELPHIA, PA
Specialist
PI on 2 active trials
JM
Jordan Lake, MD
LINCOLN, NE
Specialist
PI on 1 active trial
JD
Jeffery Carr, DR
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 Primary lipodystrophy.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Primary lipodystrophyForum →

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Latest news about Primary lipodystrophy

No recent news articles for Primary lipodystrophy.

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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 Primary lipodystrophy

Which specialists treat Primary lipodystrophy?

6 specialists and care centers treating Primary lipodystrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.