Acquired von Willebrand syndrome

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ORPHA:99147D68.4
Who is this for?
Show terms as
2Active trials5Specialists8Treatment 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

Also known as:

Clinical phenotype terms— hover any for plain English:

Reduced factor VIII activityHP:0003125Hematological neoplasmHP:0004377Reduced von Willebrand factor activityHP:0008330Impaired ristocetin cofactor assay activityHP:0030129Gastrointestinal angiodysplasiaHP:0000471Normocytic anemiaHP:0001897Hypochromic anemiaHP:0001931Subcutaneous hemorrhageHP:0001933Persistent bleeding after traumaHP:0001934
Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Nov 2023Endothelial Colony-Forming Cells in Patients With VWD, AVWS and Healthy Subjects

Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico

TrialRECRUITING
Sep 2019Assessment of Paravalvular Leak After TAVI by Hemodynamic Measurements and Cardiac MRI

Radboud University Medical Center — NA

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Acquired von Willebrand syndrome.

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
Assessment of Paravalvular Leak After TAVI by Hemodynamic Measurements and Cardiac MRI
N/A
Active
PI: Niels van Royen, MD PhD (Radboud University Medical Center) · Sites: Nijmegen · Age: 1899 yrs
Other1 trial
Endothelial Colony-Forming Cells in Patients With VWD, AVWS and Healthy Subjects
Actively Recruiting
· Sites: Milan · Age: 1699 yrs

Specialists

5 foundView all specialists →
NP
Niels van Royen, MD PhD
Specialist
PI on 1 active trial
RA
rodrigo lopez, anesthesiologist
Specialist
PI on 1 active trial
EA
esperanza carrasco, anesthesiologist
Specialist
PI on 1 active trial
MM
Miodrag Filipovic, MD
Specialist
PI on 1 active trial
AM
Antoine RAUCH, MD,PhD
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 Acquired von Willebrand syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Acquired von Willebrand syndrome

Disease timeline:

New recruiting trial: Endothelial Colony-Forming Cells in Patients With VWD, AVWS and Healthy Subjects

A new clinical trial is recruiting patients for Acquired von Willebrand syndrome

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 Acquired von Willebrand syndrome

Are there clinical trials for Acquired von Willebrand syndrome?

Yes — 2 recruiting clinical trials are currently listed for Acquired von Willebrand syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Acquired von Willebrand syndrome?

5 specialists and care centers treating Acquired von Willebrand syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.