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)
May also be referred to as Emery-Dreifuss muscular dystrophy
Go to: www.cmdir.org
May also be referred to as LGMD D1 DNAJB6-related
Go to https://lgmd1d.org
May also be referred to as LGMD D2 TNP03-related
LGMD Subtypes with an Autosomal Recessive Inheritance Pattern (LGMD2 or LGMDR)
May also be referred to as LGMD R1 Calpain3-related
Go to: https://lgmd2a.iamrare.org
May also be referred to as LGMD R2 Dysferlin-related
To apply for inclusion in the Dysferlin Registry, please complete the Dysferlin Registry application
May also be referred to as LGMD R5 Gamma-sarcoglycan-related
May also be referred to as LGMD R4 Bèta-sarcoglycan-related
Go to: https://www.beta-sarcoglicanopathy.org/gfb-odv/registered-at-gfb-registry.html
May also be referred to as LGMD R7 Telethinin-related
Go to: www.cmdir.org
May also be referred to as LGMD R9 Dystroglycan-related
Go to: www.fkrp-registry.org
May also be referred to as LGMD R10 Titin-related
Go to: www.cmdir.org
May also be referred to as LGMD R11 Dystroglycan-related
Go to: www.cmdir.org
May also be referred to as LGMD R12 Anoctamin5-related
May also be referred to as LGMD R13 Dystroglycan-related
Go to: www.cmdir.org
May also be referred to as LGMD R15 Dystroglycan-related
Go to: www.cmdir.org
May also be referred to as LGMD R18 TRAPPC11-related
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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