SIBIDS syndrome

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:75789
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

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

Overview

Also known as:

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for SIBIDS syndrome.

View clinical trials →

No actively recruiting trials found for SIBIDS syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the SIBIDS syndrome community →

No specialists are currently listed for SIBIDS syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 SIBIDS syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

Open SIBIDS syndromeForum →

No community posts yet. Be the first to share your experience with SIBIDS syndrome.

Start the conversation →

Latest news about SIBIDS syndrome

No recent news articles for SIBIDS syndrome.

Follow this condition to be notified when news becomes available.

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.Can you confirm the correct name and Orphanet code for my diagnosis?,Is there a published case series or clinical description I can read?,Which gene or genes are thought to cause this condition?,Are there any other patients or registries I can connect with?,What specialist should coordinate my care given the uncertainty around this diagnosis?