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Do you think you have a form of Limb-Girdle Muscular Dystrophy (LGMD)? It is very important for you to get a genetically confirmed LGMD diagnosis. If your doctor tells you that you have an LGMD but doesn’t genetically confirm it, your diagnosis is incomplete. Knowing the exact form of LGMD or sub-type is important as there are health benefits for confirming an LGMD sub-type through genetic testing. Genetic testing can be performed with either a saliva or blood sample.
Have you received confirmation of your LGMD sub-type diagnosis? Please consider having your name entered into a diagnosis specific “LGMD Patient Registry”.
One of the challenges of living with a rare disease such as Limb Girdle Muscular Dystrophy (LGMD) is finding physicians and other health care specialists who have a good understanding of the disease process.
The National Organization of Rare Disorders (NORD) has designated 31 Rare Disease Centers of Excellence nationwide. Each center offers the high-quality specialized care needed to help diagnose and manage complex rare diseases. Collaboration between these institutions creates critical new connections and improves access to best-in-class clinical care and resources.
There are more than 30 known subypes (forms) of limb-girdle muscular dystrophy (LGMD). In 2017, the naming system (nomenclature) of LGMD was changed.
The American Academy of Neurology (AAN) published recommendations for the care of people with limb-girdle muscular dystrophy and related disorders.
- Summary of Evidence-based Guideline for PATIENTS and their FAMILIES
- Summary of Evidence-based Guideline for CLINICIANS
- Download the AAN Muscular Disease Guidelines “app” for through the iTunes Store or the Google Play Store
- Facts About LGMD – a publication from Muscular Dystrophy Association (MDA)
- LGMD Organizations/Foundations
- National Center for Biotechnology Information (NCBI)
- National Institute of Health (NIH)
- Muscular Dystrophy Association (MDA)
- Muscular Dystrophy Foundation Australia
- Muscular Dystrophy Canada
- Muscular Dystrophy New Zealand
- Muscular Dystrophy South Africa
- 英国肌肉萎缩症协会
- Treat-NMD: Neuromuscular Network
- Team Titin – LGMD2J and Titin Myopathy
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