Non-inflammatory vasculopathy

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33Specialists8Treatment centers

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

Non-inflammatory vasculopathy is a rare group of blood vessel diseases where the walls of blood vessels become damaged or work abnormally — but without the inflammation that is seen in more common vascular conditions. 'Vasculopathy' simply means 'disease of the blood vessels.' Unlike vasculitis (where the immune system attacks blood vessels), non-inflammatory vasculopathy involves structural or functional problems in the vessel walls themselves, such as thickening, stiffening, narrowing, or abnormal growth of the vessel wall layers. This can reduce blood flow to vital organs including the brain, kidneys, heart, and skin. Because blood vessels run throughout the entire body, symptoms can appear in many different places. People may experience strokes or mini-strokes, high blood pressure that is hard to control, kidney problems, skin changes, and problems with circulation in the hands and feet. The exact symptoms depend on which blood vessels are most affected. Treatment is mainly focused on managing symptoms and preventing complications like stroke or organ damage. There is currently no single cure for non-inflammatory vasculopathy as a group. Some underlying genetic causes may have specific treatments. Management usually involves blood pressure medications, blood thinners, and close monitoring by a team of specialists. Early diagnosis is important to slow down damage to organs.

Key symptoms:

Stroke or mini-stroke (TIA) at a young ageHigh blood pressure that is difficult to controlHeadaches, sometimes severeChanges in vision or sudden vision lossKidney problems or reduced kidney functionSkin changes such as a lacy, purplish rash (livedo reticularis)Cold or painful fingers and toes due to poor circulationMemory problems or thinking difficultiesFatigue and general weaknessChest pain or shortness of breathNumbness or tingling in the limbsLeg pain when walking (claudication)

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

3 events
Mar 2025Effect of Non-surgical Periodontal Therapy in Hypertensive Patients With Assessment of Endocan and TNF-α Levels in GCF

Ain Shams University

TrialNOT YET RECRUITING
Jan 2025Risk Characterization of Non-culprit Vessels in Patients Undergoing Primary PCI for ST-elevation MI in Multivessel Disease

University Hospital Southampton NHS Foundation Trust

TrialRECRUITING
Dec 2023Early Initiated Vasopressor Therapy in the Emergency Department

Odense University Hospital — PHASE3

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Non-inflammatory vasculopathy.

View clinical trials →

No actively recruiting trials found for Non-inflammatory vasculopathy at this time.

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

Search ClinicalTrials.gov ↗Join the Non-inflammatory vasculopathy community →

Specialists

Showing 25 of 33View all specialists →
OM
Oliver A. Cornely, MD
Specialist
PI on 2 active trials
DK
Dana King
Specialist
PI on 1 active trial36 Non-inflammatory vasculopathy publications
PM
Peter A Merkel, MD, MPH
Tampa, Florida
Specialist

Rare Disease Specialist

PI on 7 active trials
TM
Thomas Ciulla, MD
CARMEL, IN
Specialist
PI on 8 active trials
CM
Carol A Langford, MD, MHS
JAMAICA PLAIN, MA
Specialist
PI on 1 active trial
MM
Michael Stevenson, MD
Specialist
PI on 1 active trial
LM
Lasse P Bentsen, MD
Specialist
PI on 1 active trial1 Non-inflammatory vasculopathy publication
AM
Amitkumar Mehta, MD
LEXINGTON, KY
Specialist
PI on 1 active trial1 Non-inflammatory vasculopathy publication
BM
Bimalangshu Dey, MD
BOSTON, MA
Specialist
PI on 1 active trial
RM
Raphaël CINOTTI, MD
Specialist
PI on 1 active trial
RM
Ricard Ferrer Roca, MD
SAN ANTONIO, TX
Specialist
PI on 1 active trial
ZZ
Zhen-hui Zhang
Specialist
PI on 1 active trial781 Non-inflammatory vasculopathy publications
MM
Maria Grazia Zenti, MD
Specialist
PI on 2 active trials
BP
Björn Fagerberg, MD, Professor
Specialist
PI on 1 active trial
TM
Tao Fu, MD
FLUSHING, NY
Specialist
PI on 1 active trial
NP
Nick Curzen, PhD
Specialist
PI on 1 active trial
ZP
Zvonko - Rumboldt, MD, PhD
Specialist
PI on 1 active trial
JM
Jeffrey Dichter, MD
SAINT PAUL, MN
Specialist
PI on 1 active trial
SD
Song Ding
Specialist
PI on 1 active trial45 Non-inflammatory vasculopathy publications

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 Non-inflammatory vasculopathy.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Non-inflammatory vasculopathyForum →

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Latest news about Non-inflammatory vasculopathy

Disease timeline:

New recruiting trial: Early Initiated Vasopressor Therapy in the Emergency Department

A new clinical trial is recruiting patients for Non-inflammatory vasculopathy

New recruiting trial: Risk Characterization of Non-culprit Vessels in Patients Undergoing Primary PCI for ST-elevation MI in Multivessel Disease

A new clinical trial is recruiting patients for Non-inflammatory vasculopathy

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.What is the specific type of non-inflammatory vasculopathy I have, and is there a genetic cause?,Should my family members be tested for this condition?,Which organs are most at risk, and how will we monitor them over time?,What medications do you recommend, and what are the risks and benefits of each?,What warning signs should prompt me to go to the emergency room immediately?,Are there any clinical trials or new treatments I might be eligible for?,What lifestyle changes can I make to slow the progression of this disease?

Common questions about Non-inflammatory vasculopathy

What is Non-inflammatory vasculopathy?

Non-inflammatory vasculopathy is a rare group of blood vessel diseases where the walls of blood vessels become damaged or work abnormally — but without the inflammation that is seen in more common vascular conditions. 'Vasculopathy' simply means 'disease of the blood vessels.' Unlike vasculitis (where the immune system attacks blood vessels), non-inflammatory vasculopathy involves structural or functional problems in the vessel walls themselves, such as thickening, stiffening, narrowing, or abnormal growth of the vessel wall layers. This can reduce blood flow to vital organs including the brai

Which specialists treat Non-inflammatory vasculopathy?

25 specialists and care centers treating Non-inflammatory vasculopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.