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Do you think you have a form of Limb-Girdle Muscular Dystrophy (LGMD)? \u00a0It is very important for you to get a genetically confirmed LGMD diagnosis.\u00a0\u00a0 If your doctor tells you that you have an LGMD but doesn\u2019t genetically confirm it, your diagnosis is incomplete.\u00a0 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.\u00a0 Genetic testing can be performed with either a saliva or blood sample.<\/p>\n
Have you received confirmation of your LGMD sub-type diagnosis?\u00a0 Please consider having your name entered into a diagnosis specific \u201cLGMD Patient Registry\u201d.<\/p>\n
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.<\/p>\n
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.<\/p>\n
There are more than 30 known subypes (forms) of limb-girdle muscular dystrophy (LGMD).\u00a0 In 2017, the naming system (nomenclature) of LGMD was changed.<\/p>\n
The American Academy of Neurology (AAN) published recommendations for the care of people with limb-girdle muscular dystrophy and related disorders.<\/p>\n
Pharmaceutical \/ Biotech Websites:<\/strong><\/p>\n\n
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