Bohring-Opitz syndrome

Last reviewed

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ORPHA:97297OMIM:605039Q87.8
Who is this for?
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22Specialists8Treatment 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:

NephroblastomaHP:0002667MedulloblastomaHP:0002885Nevus flammeusHP:0001052Facial hypotoniaHP:0000297Retinal atrophyHP:0001105Severe failure to thriveHP:0001525
Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

1 event
Apr 2019Ruxolitinib for Bronchiolitis Obliterans Syndrome (BOS) After Allogeneic Hematopoietic Cell Transplantation (HCT)

Massachusetts General Hospital — PHASE2

TrialACTIVE NOT RECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Bohring-Opitz syndrome.

View clinical trials →

No actively recruiting trials found for Bohring-Opitz syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Bohring-Opitz syndrome community →

Specialists

22 foundView all specialists →
WT
Wen-Hann Tan
BOSTON, MA
Specialist
2 Bohring-Opitz syndrome publications
RK
Rebecca R Kianmahd
ALHAMBRA, CA
Specialist
2 Bohring-Opitz syndrome publications
BR
Bianca E Russell
LOS ANGELES, CA
Specialist
4 Bohring-Opitz syndrome publications
AY
Anna Yu
Specialist
2 Bohring-Opitz syndrome publications
JA
Jeffrey T Anderson
Specialist
1 Bohring-Opitz syndrome publication
RW
Rujuta B Wilson
LOS ANGELES, CA
Specialist
1 Bohring-Opitz syndrome publication
ZA
Zain Awamleh
Specialist
2 Bohring-Opitz syndrome publications
RW
Rosanna Weksberg
Specialist
2 Bohring-Opitz syndrome publications
VA
Valerie A Arboleda
LOS ANGELES, CA
Specialist
2 Bohring-Opitz syndrome publications
ZM
Zachariah DeFilipp, MD
ATLANTA, GA
Specialist
PI on 5 active trials
SM
Scott Palmer, MD
Specialist
PI on 2 active trials
WB
Wen-Hann Tan, BMBS
Specialist
PI on 6 active trials
BM
Bianca Russell, MD
LOS ANGELES, CA
Specialist
PI on 1 active trial
LP
Loren Pena, MD, PhD
Specialist
PI on 1 active trial
AM
Aldo T Iacono, MD
NEW HYDE PARK, NY
Specialist
PI on 2 active trials
VP
Vandana Shashi, MD, PhD
DURHAM, NC
Specialist
PI on 1 active trial
AW
Angela Wei
SACRAMENTO, CA
Specialist
1 Bohring-Opitz syndrome publication
IL
Isabella Lin
WEST LINN, OR
Specialist
1 Bohring-Opitz syndrome publication
MA
Maya C Ayoub
ORLANDO, FL
Specialist
1 Bohring-Opitz syndrome publication
AN
Aileen Ning
Specialist
1 Bohring-Opitz syndrome publication
AH
Analeyla Herrera
Specialist
1 Bohring-Opitz syndrome publication
MS
Meghna Singh
SAN MATEO, CA
Specialist
1 Bohring-Opitz syndrome publication

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 Bohring-Opitz syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Bohring-Opitz syndrome

Disease timeline:

New recruiting trial: Study to Evaluate ARINA-1 in the Prevention of Bronchiolitis Obliterans Progression in Participants With Bilateral Lung Transplant

A new clinical trial is recruiting patients for Bohring-Opitz syndrome

New recruiting trial: LAM-001 in Lung Transplant Recipients With Bronchiolitis Obliterans Syndrome.

A new clinical trial is recruiting patients for Bohring-Opitz syndrome

New recruiting trial: Nintedanib in Patients With Bronchiolitis Obliterans Syndrome Following Hematopoietic Stem Cell Transplantation

A new clinical trial is recruiting patients for Bohring-Opitz syndrome

New recruiting trial: The Longitudinal Impact of Respiratory Viruses on Bronchiolitis Obliterans Syndrome After Allogeneic Hematopoietic Cell Transplantation (The RV-BOS Study)

A new clinical trial is recruiting patients for Bohring-Opitz 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 Bohring-Opitz syndrome

Which specialists treat Bohring-Opitz syndrome?

22 specialists and care centers treating Bohring-Opitz syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.