To learn more about the COVID-19 financial assistance programs and links to apply, please CLICK HERE

LGMD Resources

Peer Support on Social Media:

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.   

LGMD Grant Opportunities

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.

LGMD Naming System (LGMD Nomenclature)

There are more than 30 known sub-types (forms) of Limb Girdle Muscular Dystrophy (LGMD). In 2017, the naming system (nomenclature) of limb girdle muscular dystrophies was changed.

Diagnostic Resources – Genetic Testing:

Do you think you have a form of Limb Girdle Muscular Dystrophy?  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.

International LGMD Patient Registries

Have you received confirmation of your LGMD sub-type diagnosis?  Please consider having your name entered into a diagnosis specific “LGMD Patient Registry”.

LGMD Specialists – Physicians

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.

LGMD Clinical Trials & Natural History Studies

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

Checklist for Assessing the Legitimacy of Any Proposed LGMD Treatment

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!

A Step-by-Step Guide for obtaining a wheelchair

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!

Guidelines for LGMD Diagnosis and Care:

The American Academy of Neurology (AAN) published recommendations for the care of people with limb-girdle muscular dystrophy and related disorders.

Applying for Social Security Benefits

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).

Other Resources for disease-specific medical information

Pharmaceutical / Biotech Websites:

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.

Donate Now Button

Facebook__Find_us_on_2      twitter-follow


Translate »