Congenital-onset Steinert myotonic dystrophy

Last reviewed

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ORPHA:589821OMIM:160900G71.1
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3Specialists8Treatment 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:

Facial hypotoniaHP:0000297Tented upper lip vermilionHP:0010804Abnormally slow thought processHP:0031843Speech apraxiaHP:0011098First degree atrioventricular blockHP:0011705Bundle branch blockHP:0011710
Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Congenital-onset Steinert myotonic dystrophy.

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No actively recruiting trials found for Congenital-onset Steinert myotonic dystrophy at this time.

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Specialists

3 foundView all specialists →
HM
Harriet Gray-Stephens, BM BCh, MA (Oxon), MFPM
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 Congenital-onset Steinert myotonic dystrophy.

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Community

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Latest news about Congenital-onset Steinert myotonic dystrophy

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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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 Congenital-onset Steinert myotonic dystrophy

Which specialists treat Congenital-onset Steinert myotonic dystrophy?

3 specialists and care centers treating Congenital-onset Steinert myotonic dystrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.