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

Email

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 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

Go to: www.lgmd2l-foundation.org/patient-registration

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

Go to: https://camronscure.com/contact-us/

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)

Our Advocacy Partners