Clinical Trials

Clinical Trials and Natural History Studies are vital for advancing research to help find a treatment and cure for LGMD

Patients can empower themselves by investigating whether or not a treatment has been published and proven to be safe and effective.   For the health & safety of the LGMD patient, it is extremely important to determine whether a treatment is legitimate!

Diagnostic & Care

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.


Living with a progressive neuromuscular disease such as Limb Girdle Muscular Dystrophy can be financially challenging at times.  There are many disability related costs that public and private insurance do not typically cover.  Below are some resources that may be able to provide assistance to help offset the financial burden.

Individuals with  Muscular Dystrophy (MD), often face daily challenges in performing essential tasks, including activities in your personal life as well as job functions. If your MD prevents you from earning a living through gainful employment, then you can potentially qualify for disability benefits from the Social Security Administration (SSA).

Patient & Family

Social media has profoundly changed the way people with LGMD connect to others — around the corner and around the world.  Thankfully, LGMD patients and their family members are now able to access peer support via the internet.

In 2021, The Speak Foundation began publishing LGMD News, a quarterly magazine focused on limb-girdle muscular dystrophy.  To learn more and sign up for this free publication, please visit The Speak Foundation website.

Getting a proper wheelchair is so important for enhancing your function, maintaining comfort and improving your independence. It is a big decision…so you want to be well informed throughout the entire process.

  • Mobility Map” – an online step by step guide on how to get “The Right Wheelchair” for your specific needs!

PLEASE NOTE: LGMD Awareness Foundation, Inc. strives to make the information on this website as timely and accurate as possible, we make no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site. Reference in this site does not constitute endorsement or recommendation by LGMD Awareness Foundation, Inc.