Macrocystic lymphatic malformation

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ORPHA:79489D18.1
Who is this for?
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1Active trials6Specialists8Treatment centers

Where are you in your journey?

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

Also known as:

Cavernous lymphangiomaCavernous lymphatic malformationMacrocystic lymphangioma
Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Oct 2023Safety and Efficacy Study of Intracystic TARA-002 for the Treatment of Lymphatic Malformations in Participants 6 Months to Less Than 18 Years of Age

Protara Therapeutics — PHASE2

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Macrocystic lymphatic malformation.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Phase 21 trial
Safety and Efficacy Study of Intracystic TARA-002 for the Treatment of Lymphatic Malformations in Participants 6 Months to Less Than 18 Years of Age
Phase 2
Actively Recruiting
PI: Chief Scientific Operations Officer (Protara Therapeutics) · Sites: Birmingham, Alabama; Little Rock, Arkansas +8 more · Age: 0–18 yrs
View on ClinicalTrials.gov ↗I'm interested →

Specialists

6 foundView all specialists →
CO
Chief Scientific Operations Officer
Specialist
PI on 3 active trials
LF
Lydia Pathmanathan, MBBS, FRACP.
Specialist
PI on 1 active trial
SF
Stephen Luen, MBChB, FRACP.
Specialist
PI on 1 active trial
TF
Tony Penington, MBBS, FRACS.
Specialist
PI on 1 active trial
GM
Gamal El-Tagy, MD
Specialist
PI on 1 active trial
IT
Imen Mehri Turki
Specialist
PI on 2 active trials

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 Macrocystic lymphatic malformation.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Macrocystic lymphatic malformation

Disease timeline:

New recruiting trial: Safety and Efficacy Study of Intracystic TARA-002 for the Treatment of Lymphatic Malformations in Participants 6 Months to Less Than 18 Years of Age

A new clinical trial is recruiting patients for Macrocystic lymphatic malformation

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 Macrocystic lymphatic malformation

Are there clinical trials for Macrocystic lymphatic malformation?

Yes — 1 recruiting clinical trial is currently listed for Macrocystic lymphatic malformation on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Macrocystic lymphatic malformation?

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