For people with LGMD

Genetic testing generates new possibilities

The importance of genetic testing

A genetic test helps healthcare professionals reach a definitive LGMD subtype diagnosis.



Personalize care

Some subtypes may cause heart and lung complications and some may cause loss of ambulation earlier on. Different LGMD subtypes have different symptoms and require different types of care.

Help with family planning

Because LGMD is genetic, it can affect certain family plans. With the help of a genetic counselor, a definitive subtype can help identify who in your family may be at risk.

Enrollment in clinical trials

Identifying the genetic subtype could allow participation in subtype-specific clinical trials.

Receiving a genetic test is now more accessible

Genetic testing has become more accessible and the technology has greatly accelerated the time to diagnosis. A blood test, noninvasive buccal (inside of cheek) swab, or saliva sample is needed to help reach a diagnosis.

There are currently several programs that offer sponsored no-charge genetic testing to individuals:

invitae logo


Detect MD

Sponsored no-charge genetic testing for individuals suspected of having muscular dystrophy. The program includes a comprehensive neuromuscular panel that tests for neuromuscular disorders, including known LGMD genes. Tests can only be ordered by healthcare providers.*




The Lantern Project

Sponsored no-charge genetic testing for individuals with symptoms suggestive of a LGMD or with clinical diagnosis of an unspecified LGMD requiring genetic confirmation. The program includes a focused neuromuscular panel for known LGMD genes. Tests can be ordered by healthcare providers.*


This is not an exhaustive list of testing options for LGMD. Other testing options are commercially available through insurance or self-pay.

For individuals who have received negative or inconclusive results, the Rare Genomes Project can provide whole exome sequencing and research opportunities.

*The tests offered through these programs are laboratory-developed tests (LDT) that have been validated by Invitae and PerkinElmer Genomics. For more information, please review the patient consent forms (Invitae, PerkinElmer Genomics).
The privacy of individuals tested through both programs is protected:
± The program will never release an individual's genetic information to their insurance company
± Third parties, including commercial organizations, may receive data indicating that an individual has been diagnosed in a given medical practice, but no individually identifiable information is shared


Want to know more about the potential outcomes of genetic testing?

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What Is LGMD?

A group of inherited neuromuscular diseases that cause progressive muscle weakness

Disease Management

Current approaches focus on symptom management for individual patient needs