X-linked Emery-Dreifuss muscular dystrophy

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ORPHA:98863OMIM:300696G71.0
Who is this for?
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4Specialists8Treatment 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:

Limb-girdle muscular dystrophyHP:0006785Increased LDL cholesterol concentrationHP:0003141Spinal rigidityHP:0003306Decreased cervical spine flexion due to contractures of posterior cervical musclesHP:0004631
Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for X-linked Emery-Dreifuss muscular dystrophy.

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No actively recruiting trials found for X-linked Emery-Dreifuss muscular dystrophy at this time.

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Specialists

4 foundView all specialists →
NM
Niklas Darin, M.D
Specialist
PI on 1 active trial
GP
Gisele Bonne, PhD
Specialist
PI on 1 active trial
RM
Rabah Ben Yaou, MD
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 X-linked Emery-Dreifuss muscular dystrophy.

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Community

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Latest news about X-linked Emery-Dreifuss muscular dystrophy

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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 X-linked Emery-Dreifuss muscular dystrophy

Which specialists treat X-linked Emery-Dreifuss muscular dystrophy?

4 specialists and care centers treating X-linked Emery-Dreifuss muscular dystrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.