Have you and/or a family member received genetic confirmation of your limb-girdle muscular dystrophy (LGMD) sub-type?
If so, please be sure to have your name and information entered in the PATIENT REGISTRY for that diagnosis.
When you register, you may have access to the following services, depending on the registry:
- General information about your disease
- Help to find appropriate experts (both scientific and clinical) in your country or area
- Information about ongoing or upcoming clinical trials relevant to your disease
- A source of knowledge about clinical trials and treatment options that are under development
LGMD Subtypes with an Autosomal Dominant Inheritance Pattern (LGMD1 or LGMDD)
Go to: www.cmdir.org
Go to https://lgmd1d.org
Go to https://lgmd2a.iamrare.org
LGMD Subtypes with an Autosomal Recessive Inheritance Pattern (LGMD2 or LGMDR)
Go to: https://lgmd2a.iamrare.org
To apply for inclusion in the Dysferlin Registry, please complete the Dysferlin Registry application
Go to: https://www.beta-sarcoglicanopathy.org/gfb-odv/registered-at-gfb-registry.html
Go to: www.cmdir.org
Go to: www.fkrp-registry.org
Go to: www.cmdir.org
Go to: www.cmdir.org
Go to: www.cmdir.org
Go to: www.cmdir.org
Bethlem myopathy recessive may also be referred to as LGMD R22 Collagen 6-related
Bethlem myopathy dominant may also be referred to as LGMD D5 Collagen 6-related
Go to: https://collagen6.org
Other LGMD (not limited to a genetically confirmed subtype)
Other Neuromuscular Diseases
May at one time have been referred to as LGMD 2V
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