Accurate diagnosis and effective care are paramount for individuals with limb-girdle muscular dystrophy (LGMD). The “Diagnostic & Care Resources” page is meticulously curated to provide insights, guidance, and resources related to the diagnostic processes and care methodologies for LGMD. Whether you’re embarking on the diagnostic journey or seeking advanced care options, this guide aims to offer clarity, support, and direction, ensuring you’re equipped with the knowledge to make informed decisions.<\/p>\n<\/div>\n<\/div><\/div><\/div><\/div><\/div>
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
Exercise and LGMD:<\/strong><\/p>\n Pod-NMD<\/a> –<\/strong> <\/span><\/p>\n Exercise advice for adults with muscle-wasting conditions<\/strong> <\/a><\/p>\n B-FIT Training Guide<\/strong><\/a><\/p>\n Looking for Answers on Exercise<\/strong><\/a><\/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
\n
\n
\n
<\/i><\/i><\/span>NORD RARE DISEASE CENTERS OF EXCELLENCE<\/span><\/a><\/h5><\/div>
\n
<\/i><\/i><\/span>LGMD NAMING SYSTEM (LGMD NOMENCLATURE)<\/span><\/a><\/h5><\/div>
\n
<\/i><\/i><\/span>GUIDELINES FOR LGMD DIAGNOSIS AND CARE:<\/span><\/a><\/h5><\/div>
\n
<\/i><\/i><\/span>OTHER RESOURCES FOR DISEASE-SPECIFIC MEDICAL INFORMATION<\/span><\/a><\/h5><\/div>
\n
\n
\n
\n
\n