Parkes Weber syndrome

Last reviewed

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ORPHA:90307OMIM:608354Q87.2
Who is this for?
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20Specialists8Treatment 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

Clinical phenotype terms— hover any for plain English:

Arteriovenous malformationHP:0100026High-output congestive heart failureHP:0001722Vascular dilatationHP:0002617Varicose veinsHP:0002619Arteriovenous fistulaHP:0004947Vascular tortuosityHP:0004948Prominent superficial blood vesselsHP:0007394Muscle hypertrophy of the lower extremitiesHP:0008968Venous malformationHP:0012721Capillary malformationHP:0025104Bounding pulseHP:0032555Hemihypertrophy of lower limbHP:0100553Peripheral arteriovenous fistulaHP:0100784Subarachnoid hemorrhageHP:0002138
Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Parkes Weber syndrome.

View clinical trials →

No actively recruiting trials found for Parkes Weber syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Parkes Weber syndrome community →

Specialists

20 foundView all specialists →
EM
Eric H Kossoff, MD
BALTIMORE, MD
Specialist
PI on 6 active trials
AM
Anne M Comi, M.D.
BALTIMORE, MD
Specialist
PI on 3 active trials
LP
Leyre Aguado, MD PhD
Specialist
PI on 1 active trial
AM
Anne M Comi, MD
BALTIMORE, MD
Specialist
PI on 2 active trials1 Parkes Weber syndrome publication
SM
Sharon Freedman, M.D.
DURHAM, NC
Specialist
PI on 1 active trial
MP
Maider Pretel, MD PhD
Specialist
PI on 1 active trial
LM
Laura Marqués, MD
Specialist
PI on 1 active trial1 Parkes Weber syndrome publication
BM
B. Wirostko, M.D.
Specialist
PI on 1 active trial
MM
Melisa Ruiz-Gutierrez, M.D.
BOSTON, MA
Specialist
PI on 1 active trial
TP
Timothy LeCras, PhD
Specialist
PI on 1 active trial
JP
Jeffrey Loeb, MD, PhD
Specialist
PI on 1 active trial
NR
Naiem Nassiri, MD, FSVS, RPVI
DARIEN, CT
Specialist
PI on 1 active trial
DP
David A Woodrum, MD, PhD
MARION, VA
Specialist
PI on 1 active trial
EB
Ekaterina M Listovskaya, BSc
Specialist
PI on 1 active trial
GM
Guillaume Canaud, MD,PHD
Specialist
PI on 1 active trial
EM
Emily Bendel, MD
ROCHESTER, MN
Specialist
PI on 1 active trial
MM
Marcelo M Serra, MD
Specialist
PI on 1 active trial
UD
Urban W Geisthoff, Priv.-Doz. Dr.med.
Specialist
PI on 1 active trial
JM
John S Nelson, M.D,PhD
Specialist
PI on 1 active trial
VM
Violaine MIZZI
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 Parkes Weber syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Parkes Weber syndrome

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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 Parkes Weber syndrome

Which specialists treat Parkes Weber syndrome?

20 specialists and care centers treating Parkes Weber syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.